![](https://wfh.org/wp-content/uploads/2023/08/Iorio-Alfonso.jpg)
Alfonso Iorio
Professor, McMaster University
Hamilton, Canada
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WFH Events » Foro Mundial de la FMH
Thank you for visiting our Websites and Platforms and reviewing our Privacy Policy, as well as our personal information and privacy practices.
The World Federation of Hemophilia (hereinafter "the WFH" or "WFH") recognizes that privacy is everyone's business and takes the confidentiality and security of your personal information very seriously. For this reason, we have taken steps to ensure that any personal information we collect about you is protected by a range of rigorous procedures and security measures to ensure that your information is kept confidential and used only for the purposes detailed in this Policy, unless otherwise authorized by law.
WFH is committed to protecting the privacy of all individuals about whom it collects personal information. To this end, this policy aims to establish responsible and transparent practices for the management of personal information, and to meet the requirements of the rules established by the Act Respecting the Protection of Personal Information in the Private Sector ("ARPPIPS", CQLR c. P-39.1) and the Personal Information Protection and Electronic Documents Act ("PIPEDA", S.C. 2000, c. 5) (hereinafter the "Acts"). WFH is also subject to the provisions of the European General Data Protection Regulation ("GDPR").
1. |
PURPOSE |
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1.1 | This WFH Digital Platforms Privacy Policy (hereinafter "Policy" or "Privacy Policy") explains not only how we collect, use, disclose and store any information related to your personal data when you visit any Website (or "Websites") or mobile applications ("Applications" or "Platforms") operated by WFH, but also how you can access, update or take control of your personal information. |
1.2 | This Policy replaces and updates the WFH Website Privacy Policy (IT 003). |
2. |
SCOPE |
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2.1 | This Policy generally applies to:
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2.2 | External links. This Policy does not apply to links to third-party websites, plug-ins, services, social networks or applications, including those offered via hyperlinks displayed on our Websites and/or Platforms. If you follow a link to a third-party website or use a third-party plug-in, please note that these third parties have their own privacy policies and we do not accept any responsibility or liability for those policies. We do not control these third-party websites and encourage you to read the privacy policy of each site you visit before providing them with any personal information. |
3. |
DEFINITION OF "PERSONAL INFORMATION" |
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3.1 | When used in this Privacy Policy, “personal information” means any information about an individual that can be used to identify an individual, including, but not limited to, your name, address, email address, telephone number, gender, banking details, employment, health or other information. |
4. |
RESPONSIBILITIES OF WFH |
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4.1 | The WFH will fulfill all requirements to protect, collect, use, disclose and retain personal information under the Acts and all other applicable laws and regulations. We attach great importance to the proper management of your data and take full responsibility for it. |
4.2 | The WFH will also ensure that it has reasonable security measures in place to protect and respect the confidentiality of any personal information in its custody and control. |
5. |
HOW DO WE COLLECT YOUR CONSENT? |
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5.1 | The WFH considers you to have validly consented to the collection, use or disclosure of your personal information if (i) you give your express written or oral consent; (ii) you voluntarily provide personal information for an obvious purpose; or (iii) if you do not object to the collection, use or disclosure of personal information by the WFH within a reasonable time after the WFH has given you clear notice, including through this Policy, of its intention to do so and the intended purposes. |
5.2 | In some cases, the WFH may collect personal information about an individual without their consent in accordance with the Acts or any other law or regulation that permits doing so. |
6. |
WHY WE COLLECT PERSONAL INFORMATION |
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6.1 | We strongly believe in both minimizing the information we collect and limiting its use and purpose. WFH uses your personal information only for the purposes and for the duration required for which it was collected, or for any use that may be required or permitted by legal compliance, government request, court order or other lawful purpose. |
6.2 | We collect personal information for a variety of reasons. In general, WFH collects only the personal information necessary to fulfill its mission. We may also collect information for administrative purposes — to better understand the visitors who come to our websites and/or Platforms and the content of our websites and/or Platforms that is of interest to them. The purposes for which we collect personal information include, but are not limited to:
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6.3 | Wherever possible, rather than using personal information, we will anonymize and/or aggregate personal information so that it no longer identifies an individual and use it for the purposes stated above or for any purpose permitted by law. |
6.4 | If we ever wish to use or disclose your personal information for purposes other than those specifically described in this Policy, we will obtain your consent. |
7. |
WHAT PERSONAL INFORMATION DO WE COLLECT? |
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7.1 | WFH only collects personal information that is directly related to one of our programs or activities. We take steps to ensure that the personal information we collect about you is adequate, relevant, not excessive and used for limited purposes. We collect only the information we need. |
7.2 | The WFH collects information on its Websites and/or Platforms in two ways: |
7.2.1 | Information you provide directly to us: In many cases, we collect personal information directly from you when you provide your information by subscribing to our Newsletter, when you fill out other forms on our Websites and/or Platforms, when you make an inquiry or when you contact us in person or through the WFH Websites and/or Platforms. The provision of this information is strictly voluntary. We strongly encourage you not to provide any information beyond what is necessary. |
7.2.2 | Information collected automatically: You should be aware that when you access or browse our Websites and/or Platforms, an exchange of information, subject to your prior consent, takes place automatically between your device and WFH's hosting environment. This exchange is required only because of the technological demands inherent in Internet browsing and is used for statistical purposes to improve your experience — the information exchanged does not identify you personally. The information exchanged is as follow:
|
7.3 | By using the WFH Websites and/or Platforms, you agree to the terms and conditions set forth in this Privacy Policy. |
8. |
USE OF COOKIES |
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8.1 | The main types of data collected on WFH Websites and/or Platforms are cookies and personalization settings. Cookies are small text files that are downloaded when you visit certain pages of a site and stored in the memory of the device you are using. Cookies are completely harmless and cannot contain any viruses. They enable certain information (browser type, language, country, identifier, etc.) to be recorded and retrieved by the server on subsequent visits. Under no circumstances do cookies allow visitors to be identified. The data remains completely anonymous and is used only to facilitate browsing and improve the WFH’s Websites and/or Platforms based on the needs of its visitors. |
8.2 | If you do not wish cookies to be used, your browser options can be configured to refuse and/or delete cookies. Please note that disabling or deleting cookies may deprive you of certain functions offered on our Websites and/or Platforms. In addition, this procedure must be repeated for each browser and computer used. |
8.3 | Google Analytics. We also gather information automatically about visits to our Websites and/or Platforms to help us maintain and improve its design, and to evaluate traffic statistics, such as the times of day and days of week at which we see peak traffic, and to assess the relative popularity of different areas of the Websites and/or Platforms. We use Google Analytics to gather this data and analyze it. Google Analytics collects information about the date and time in which our Websites and/or Platforms were accessed, and may also track a visitor’s movement within the site, but does not collect personal information about the visitor. You can install the Google Analytics Opt-out Browser Add-on to prevent information about your visits to our Websites and/or Platforms being sent to Google Analytics. Our web statistics software (Google Analytics) collects information about the date and time in which our Websites and/or Platforms were accessed, and we may also track a user’s movement within the Websites and/or Platforms. We use this data to improve our Websites and/or Platforms performance. |
8.4 | Meta Pixel. WFH also uses web beacons (“Pixels”) to analyze visitor activity to our Websites and/or Platforms. We use Meta Pixel to collect information about your interactions with our Websites and/or Platforms, such as pages visited, actions taken, buttons clicked and any pages visited as a result of the button clicks. Web beacons do not contain any personal information but may contain a unique identifier necessary for retargeting and targeted advertising. Meta Pixel allows us to measure the effectiveness of our advertising by understanding the actions you take on our Websites and/or Platforms. We use this data solely for analytical purposes to improve our services and deliver more relevant content. |
9. |
RESPONSES TO JOB OFFERS |
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9.1 | If you have applied for a job with WFH, we will use your personal information for recruitment and other human resources purposes. We keep the documents sent (CV, cover letter, etc.) by the candidates for a maximum of three (3) years. Documents are then securely destroyed. |
10. |
PROTECTION OF THE PRIVACY OF MINORS |
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10.1 | WFH does not knowingly collect personal information from children under the age of 14 without the consent of the child's parent or legal guardian. If we learn that we have collected or received personal information from a child for whom parental confirmation was required, we will delete that information. If you believe that we may have received information from or about a child for whom we should have obtained parental consent, please contact us. |
11. |
DO WE DISCLOSE YOUR PERSONAL INFORMATION TO THIRD PARTIES? |
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11.1 | Rest assured that WFH will never sell, trade, rent, share or transfer your personal information to third parties (organizations or individuals) for commercial purposes without your consent, except in the exceptional cases specifically provided for in this Policy. |
11.2 | As part of the services offered by our external suppliers. WFH may transfer personal information that we collect or that you provide as described in this Policy to service providers and other third parties we use to support our organization. Such third parties are contractually obligated to keep personal information confidential, use it only for the purposes for which we disclose it and process personal information in accordance with the standards set out in this Policy and in compliance with the Acts. |
11.3 | In the context of a legal obligation. WFH may disclose your personal information to comply with any court order, law or legal process, including to respond to any government or regulatory request, in accordance with applicable law, to combat fraud or harms to WFH or our members, or if we believe that disclosure is necessary or appropriate to protect the rights, property or safety of WFH or others. |
12. |
SHARING PERSONAL INFORMATION OUTSIDE QUÉBEC |
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12.1 | Your personal information is processed and stored in Québec. In order to carry out our mission, we may in some cases store, process and transfer your information around the world, including outside Québec or to jurisdictions outside your country of residence — if you are located in the Economic European Area or Switzerland, please review Appendix A "Additional terms" which apply to you in addition to the main terms of this Policy. Data may also be stored locally on the devices you use to access WFH Websites and/or Platforms. |
12.2 | In such cases, the transfer will only take place if we find that the information would be adequately protected, in particular considering the sensitivity of the information, the purpose for which it is used, the protection the information would be afforded, and the legal framework applicable in the state or province where the information would be transferred. Any transfer will also be subject to appropriate contractual agreements to ensure adequate protection. |
13. |
HOW DO WE PROTECT YOUR PERSONAL INFORMATION? |
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13.1 | The security of your personal information is very important to us. The personal information we collect is stored in a secure environment using industry-recognized technologies. We will protect personal information against loss or theft, unauthorized access, use or disclosure, copying, modification or destruction. |
13.2 | When you visit our Websites and/or Platforms and are asked for personal information, this information is used exclusively by WFH. In order to protect your personal information, we have implemented customary security measures that are appropriate to the sensitivity of the information collected, including the following physical, organizational, contractual and technological measures:
|
13.3 | Individuals working for WFH or acting on our behalf must make reasonable efforts to minimize the risk of unintentional disclosure of personal information. In addition, our policies, procedures and codes of conduct are clearly communicated to our employees, contractors, volunteers, consultants and subcontractors and WFH will ensure that they are adhered to and respected. All individuals who fail to comply with the principles and procedures of this Policy will be subject to corrective measures, including termination of their employment relationship, tenure or contract. |
13.4 | Despite these precautions, no method of transmission or storage is 100% secure or error-free. As a result, we cannot guarantee absolute security. If you have reason to believe that your interaction with us is no longer secure, please contact us immediately. |
13.5 | If we become aware of a security breach involving your personal information, we will notify you and the appropriate authorities as soon as possible, in accordance with the Acts. |
14. |
RETENTION AND DESTRUCTION OF PERSONAL INFORMATION |
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14.1 | Except as permitted or required by the Acts or any applicable law or regulation, WFH will retain your personal information only for as long as necessary to fulfill the purposes for which we collected it, including for the purposes of satisfying legal, accounting or reporting requirements to the appropriate government and regulatory bodies. |
14.2 | Personal information that is no longer required for the purposes for which it was collected will be destroyed, erased or made anonymous in accordance with applicable laws. |
14.3 | Under some circumstances, we may anonymize your personal information so that it can no longer be associated with you. We reserve the right to use de-identified and anonymized data for any legitimate purpose without further notice to you or your consent. |
14.4 | If the WFH uses personal information to make a decision that directly affects an individual, we will retain that information for as long as necessary to fulfill the purposes for which the information was collected. Once the information has been used, individuals may access their personal information as set out in the Acts. |
15. |
ACCESSING, CORRECTING, DE-INDEXING AND PORTABILITY OF YOUR PERSONAL INFORMATION |
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15.1 | It is important that the personal information we hold about you is accurate and current. Please keep us informed if your personal information changes. You can contact us via the WFH Online Contact Form or email us at [email protected]. |
15.2 | Upon request, an individual is entitled to be informed of the existence, use and disclosure of their personal information and to obtain access to that information, or to obtain a copy of their personal information in electronic or non-electronic format subject to appropriate notice. An individual has the right to challenge the accuracy and completeness of their personal information, have it amended, or withdraw consent to the use of their information. In addition, WFH complies with all laws regarding access to and correction of your personal information. |
15.3 | An individual has also the right to receive computerized personal information collected from them in a structured, machine-readable, and commonly used format. In certain circumstances, the individual may also ask WFH to transfer their computerized personal information directly to third parties. An individual has the right to request that the dissemination of their personal information cease, or to request that any hyperlinks associated with their name and that provide access to personal information be de-indexed or re-indexed. |
15.4 | No request for access, rectification, de-indexation or data portability may be considered unless it is made in writing and addressed to the WFH Privacy Officer. You must provide enough detail to enable the WFH to process the request. The Privacy Officer will respond within 30 days of the receipt of a request, unless it extends the time as authorized under the Acts. |
16. |
WITHDRAWING YOUR CONSENT |
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16.1 | If you have given your consent to the collection, use and transfer of your personal information, you may have the legal right to withdraw your consent under certain circumstances. To withdraw your consent, if applicable, contact us at [email protected]. |
16.2 | Please note that if you withdraw your consent, we may not be able to provide you with certain services. We will explain the impact of withdrawing your consent to help you make a decision. |
17. |
CHANGES TO OUR PRIVACY POLICY |
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17.1 | WFH will review and update its policies and procedures as required to keep current with rules and regulations, new technologies and standards. Our Privacy Policy may therefore change from time to time. We will post any Policy changes on our Websites and Platforms and, if the changes are significant, we will provide a more prominent notice. You are responsible for periodically visiting our Websites and/or Platforms and this Policy to check for any changes. |
17.2 | Please note that both the English and French versions of our Privacy Policy have equal legal value. |
18. |
CONTACT DETAILS FOR THE PRIVACY OFFICER |
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If you have any comments, questions or requests regarding this Policy or our privacy practices, or to report any abuse by third parties, please do not hesitate to contact Antonio José Almeida, WFH Senior Director, Operations and Privacy Officer by e-mail at [email protected] or at the following postal address: | |
c/o Privacy Officer, World Federation of Hemophilia 1425, boul. René-Lévesque West Suite 1200 Montreal, Québec H3G 1T7 Canada |
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We have procedures in place to receive and respond to complaints or inquiries about our handling of personal information, our compliance with this Policy and applicable privacy laws. If you are not satisfied with WFH's handling of your personal information, you may file a complaint with WFH. The complaint will be investigated by the WFH Privacy Officer, who will determine whether the handling of the information complies with WFH policies and practices and any other applicable laws. The Privacy Officer will make every reasonable effort to resolve complaints. The person filing the complaint will be informed of any progress or outcome of the investigation within a maximum of 30 working days of receipt of the request and/or any additional time required to complete the investigation. |
APPENDIX A |
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ADDITIONAL TERMS FOR USERS LOCATED IN THE ECONOMIC EUROPEAN AREA (EEA) AND SWITZERLAND | |
If you are located in the European Economic Area (EEA) or Switzerland, these additional terms apply to you in addition to the main terms of WFH Privacy Policy. In case of a contradiction between the Privacy Policy and these additional terms, the latter will prevail. | |
1 | LEGAL BASIS FOR PROCESSING PERSONAL INFORMATION UNDER THE GENERAL DATA PROTECTION REGULATION (GDPR) |
1.1 | If you are from the European Economic Area (EEA) or Switzerland, WFH’s legal basis for collecting and using the personal information described in this Privacy Policy depends on the personal information we collect and the specific context in which we collect it. We only process your Personal information if we have a legal basis to do so, which includes:
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If you have any questions about the lawful bases upon which we collect and use your personal data, please contact: Antonio José Almeida,WFH Senior Director, Operations and Privacy Officer by e-mail at [email protected] or at the following postal address: c/o Privacy Officer, World Federation of Hemophilia, 1425, boul. René-Lévesque, West Suite 1200, Montreal, Québec, H3G 1T7, Canada |
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2 | TRANSFER OF YOUR PERSONAL INFORMATION OUTSIDE OF THE EEA OR SWITZERLAND |
2.1 | We may process information outside of the EEA or Switzerland, including Canada and the USA. |
3 | ADDITIONAL RIGHTS REGARDING YOUR PERSONAL INFORMATION UNDER THE GENERAL DATA PROTECTION REGULATION (GDPR) |
3.1 | If you are a resident of the European Economic Area (EEA) or Switzerland, you have certain data protection rights. WFH aims to take reasonable steps to allow you to correct, amend, delete or limit the use of your personal information. |
3.2 | If you wish to be informed about what personal information we hold about you and if you want it to be removed from our systems, please contact us. |
3.3 | In addition to the rights mentioned in the section 15 ("Accessing, correcting, de-indexing and portability of your personal information") and in section 16 ("Withdrawing your consent"), in certain circumstances, you also have the following data protection right:
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1.1 | This WFH Digital Platforms Privacy Policy (hereinafter "Policy" or "Privacy Policy") explains not only how we collect, use, disclose and store any information related to your personal data when you visit any Website (or "Websites") or mobile applications ("Applications" or "Platforms") operated by WFH, but also how you can access, update or take control of your personal information. |
1.2 | This Policy replaces and updates the WFH Website Privacy Policy (IT 003). |
2.1 | This Policy generally applies to:
|
2.2 | External links. This Policy does not apply to links to third-party websites, plug-ins, services, social networks or applications, including those offered via hyperlinks displayed on our Websites and/or Platforms. If you follow a link to a third-party website or use a third-party plug-in, please note that these third parties have their own privacy policies and we do not accept any responsibility or liability for those policies. We do not control these third-party websites and encourage you to read the privacy policy of each site you visit before providing them with any personal information. |
3.1 | When used in this Privacy Policy, “personal information” means any information about an individual that can be used to identify an individual, including, but not limited to, your name, address, email address, telephone number, gender, banking details, employment, health or other information. |
4.1 | The WFH will fulfill all requirements to protect, collect, use, disclose and retain personal information under the Acts and all other applicable laws and regulations. We attach great importance to the proper management of your data and take full responsibility for it. |
4.2 | The WFH will also ensure that it has reasonable security measures in place to protect and respect the confidentiality of any personal information in its custody and control. |
5.1 | The WFH considers you to have validly consented to the collection, use or disclosure of your personal information if (i) you give your express written or oral consent; (ii) you voluntarily provide personal information for an obvious purpose; or (iii) if you do not object to the collection, use or disclosure of personal information by the WFH within a reasonable time after the WFH has given you clear notice, including through this Policy, of its intention to do so and the intended purposes. |
5.2 | In some cases, the WFH may collect personal information about an individual without their consent in accordance with the Acts or any other law or regulation that permits doing so. |
6.1 | We strongly believe in both minimizing the information we collect and limiting its use and purpose. WFH uses your personal information only for the purposes and for the duration required for which it was collected, or for any use that may be required or permitted by legal compliance, government request, court order or other lawful purpose. |
6.2 | We collect personal information for a variety of reasons. In general, WFH collects only the personal information necessary to fulfill its mission. We may also collect information for administrative purposes — to better understand the visitors who come to our websites and/or Platforms and the content of our websites and/or Platforms that is of interest to them. The purposes for which we collect personal information include, but are not limited to:
|
6.3 | Wherever possible, rather than using personal information, we will anonymize and/or aggregate personal information so that it no longer identifies an individual and use it for the purposes stated above or for any purpose permitted by law. |
6.4 | If we ever wish to use or disclose your personal information for purposes other than those specifically described in this Policy, we will obtain your consent. |
7.1 | WFH only collects personal information that is directly related to one of our programs or activities. We take steps to ensure that the personal information we collect about you is adequate, relevant, not excessive and used for limited purposes. We collect only the information we need. |
7.2 | The WFH collects information on its Websites and/or Platforms in two ways: |
7.2.1 | Information you provide directly to us: In many cases, we collect personal information directly from you when you provide your information by subscribing to our Newsletter, when you fill out other forms on our Websites and/or Platforms, when you make an inquiry or when you contact us in person or through the WFH Websites and/or Platforms. The provision of this information is strictly voluntary. We strongly encourage you not to provide any information beyond what is necessary. |
7.2.2 | Information collected automatically: You should be aware that when you access or browse our Websites and/or Platforms, an exchange of information, subject to your prior consent, takes place automatically between your device and WFH's hosting environment. This exchange is required only because of the technological demands inherent in Internet browsing and is used for statistical purposes to improve your experience — the information exchanged does not identify you personally. The information exchanged is as follow:
|
7.3 | By using the WFH Websites and/or Platforms, you agree to the terms and conditions set forth in this Privacy Policy. |
8.1 | The main types of data collected on WFH Websites and/or Platforms are cookies and personalization settings. Cookies are small text files that are downloaded when you visit certain pages of a site and stored in the memory of the device you are using. Cookies are completely harmless and cannot contain any viruses. They enable certain information (browser type, language, country, identifier, etc.) to be recorded and retrieved by the server on subsequent visits. Under no circumstances do cookies allow visitors to be identified. The data remains completely anonymous and is used only to facilitate browsing and improve the WFH’s Websites and/or Platforms based on the needs of its visitors. |
8.2 | If you do not wish cookies to be used, your browser options can be configured to refuse and/or delete cookies. Please note that disabling or deleting cookies may deprive you of certain functions offered on our Websites and/or Platforms. In addition, this procedure must be repeated for each browser and computer used. |
8.3 | Google Analytics. We also gather information automatically about visits to our Websites and/or Platforms to help us maintain and improve its design, and to evaluate traffic statistics, such as the times of day and days of week at which we see peak traffic, and to assess the relative popularity of different areas of the Websites and/or Platforms. We use Google Analytics to gather this data and analyze it. Google Analytics collects information about the date and time in which our Websites and/or Platforms were accessed, and may also track a visitor’s movement within the site, but does not collect personal information about the visitor. You can install the Google Analytics Opt-out Browser Add-on to prevent information about your visits to our Websites and/or Platforms being sent to Google Analytics. Our web statistics software (Google Analytics) collects information about the date and time in which our Websites and/or Platforms were accessed, and we may also track a user’s movement within the Websites and/or Platforms. We use this data to improve our Websites and/or Platforms performance. |
8.4 | Meta Pixel. WFH also uses web beacons (“Pixels”) to analyze visitor activity to our Websites and/or Platforms. We use Meta Pixel to collect information about your interactions with our Websites and/or Platforms, such as pages visited, actions taken, buttons clicked and any pages visited as a result of the button clicks. Web beacons do not contain any personal information but may contain a unique identifier necessary for retargeting and targeted advertising. Meta Pixel allows us to measure the effectiveness of our advertising by understanding the actions you take on our Websites and/or Platforms. We use this data solely for analytical purposes to improve our services and deliver more relevant content. |
9.1 | If you have applied for a job with WFH, we will use your personal information for recruitment and other human resources purposes. We keep the documents sent (CV, cover letter, etc.) by the candidates for a maximum of three (3) years. Documents are then securely destroyed. |
10.1 | WFH does not knowingly collect personal information from children under the age of 14 without the consent of the child's parent or legal guardian. If we learn that we have collected or received personal information from a child for whom parental confirmation was required, we will delete that information. If you believe that we may have received information from or about a child for whom we should have obtained parental consent, please contact us. |
11.1 | Rest assured that WFH will never sell, trade, rent, share or transfer your personal information to third parties (organizations or individuals) for commercial purposes without your consent, except in the exceptional cases specifically provided for in this Policy. |
11.2 | As part of the services offered by our external suppliers. WFH may transfer personal information that we collect or that you provide as described in this Policy to service providers and other third parties we use to support our organization. Such third parties are contractually obligated to keep personal information confidential, use it only for the purposes for which we disclose it and process personal information in accordance with the standards set out in this Policy and in compliance with the Acts. |
11.3 | In the context of a legal obligation. WFH may disclose your personal information to comply with any court order, law or legal process, including to respond to any government or regulatory request, in accordance with applicable law, to combat fraud or harms to WFH or our members, or if we believe that disclosure is necessary or appropriate to protect the rights, property or safety of WFH or others. |
12.1 | Your personal information is processed and stored in Québec. In order to carry out our mission, we may in some cases store, process and transfer your information around the world, including outside Québec or to jurisdictions outside your country of residence — if you are located in the Economic European Area or Switzerland, please review Appendix A "Additional terms" which apply to you in addition to the main terms of this Policy. Data may also be stored locally on the devices you use to access WFH Websites and/or Platforms. |
12.2 | In such cases, the transfer will only take place if we find that the information would be adequately protected, in particular considering the sensitivity of the information, the purpose for which it is used, the protection the information would be afforded, and the legal framework applicable in the state or province where the information would be transferred. Any transfer will also be subject to appropriate contractual agreements to ensure adequate protection. |
13.1 | The security of your personal information is very important to us. The personal information we collect is stored in a secure environment using industry-recognized technologies. We will protect personal information against loss or theft, unauthorized access, use or disclosure, copying, modification or destruction. |
13.2 | When you visit our Websites and/or Platforms and are asked for personal information, this information is used exclusively by WFH. In order to protect your personal information, we have implemented customary security measures that are appropriate to the sensitivity of the information collected, including the following physical, organizational, contractual and technological measures:
|
13.3 | Individuals working for WFH or acting on our behalf must make reasonable efforts to minimize the risk of unintentional disclosure of personal information. In addition, our policies, procedures and codes of conduct are clearly communicated to our employees, contractors, volunteers, consultants and subcontractors and WFH will ensure that they are adhered to and respected. All individuals who fail to comply with the principles and procedures of this Policy will be subject to corrective measures, including termination of their employment relationship, tenure or contract. |
13.4 | Despite these precautions, no method of transmission or storage is 100% secure or error-free. As a result, we cannot guarantee absolute security. If you have reason to believe that your interaction with us is no longer secure, please contact us immediately. |
13.5 | If we become aware of a security breach involving your personal information, we will notify you and the appropriate authorities as soon as possible, in accordance with the Acts. |
14.1 | Except as permitted or required by the Acts or any applicable law or regulation, WFH will retain your personal information only for as long as necessary to fulfill the purposes for which we collected it, including for the purposes of satisfying legal, accounting or reporting requirements to the appropriate government and regulatory bodies. |
14.2 | Personal information that is no longer required for the purposes for which it was collected will be destroyed, erased or made anonymous in accordance with applicable laws. |
14.3 | Under some circumstances, we may anonymize your personal information so that it can no longer be associated with you. We reserve the right to use de-identified and anonymized data for any legitimate purpose without further notice to you or your consent. |
14.4 | If the WFH uses personal information to make a decision that directly affects an individual, we will retain that information for as long as necessary to fulfill the purposes for which the information was collected. Once the information has been used, individuals may access their personal information as set out in the Acts. |
15.1 | It is important that the personal information we hold about you is accurate and current. Please keep us informed if your personal information changes. You can contact us via the WFH Online Contact Form or email us at [email protected]. |
15.2 | Upon request, an individual is entitled to be informed of the existence, use and disclosure of their personal information and to obtain access to that information, or to obtain a copy of their personal information in electronic or non-electronic format subject to appropriate notice. An individual has the right to challenge the accuracy and completeness of their personal information, have it amended, or withdraw consent to the use of their information. In addition, WFH complies with all laws regarding access to and correction of your personal information. |
15.3 | An individual has also the right to receive computerized personal information collected from them in a structured, machine-readable, and commonly used format. In certain circumstances, the individual may also ask WFH to transfer their computerized personal information directly to third parties. An individual has the right to request that the dissemination of their personal information cease, or to request that any hyperlinks associated with their name and that provide access to personal information be de-indexed or re-indexed. |
15.4 | No request for access, rectification, de-indexation or data portability may be considered unless it is made in writing and addressed to the WFH Privacy Officer. You must provide enough detail to enable the WFH to process the request. The Privacy Officer will respond within 30 days of the receipt of a request, unless it extends the time as authorized under the Acts. |
16.1 | If you have given your consent to the collection, use and transfer of your personal information, you may have the legal right to withdraw your consent under certain circumstances. To withdraw your consent, if applicable, contact us at [email protected]. |
16.2 | Please note that if you withdraw your consent, we may not be able to provide you with certain services. We will explain the impact of withdrawing your consent to help you make a decision. |
17.1 | WFH will review and update its policies and procedures as required to keep current with rules and regulations, new technologies and standards. Our Privacy Policy may therefore change from time to time. We will post any Policy changes on our Websites and Platforms and, if the changes are significant, we will provide a more prominent notice. You are responsible for periodically visiting our Websites and/or Platforms and this Policy to check for any changes. |
17.2 | Please note that both the English and French versions of our Privacy Policy have equal legal value. |
If you have any comments, questions or requests regarding this Policy or our privacy practices, or to report any abuse by third parties, please do not hesitate to contact Antonio José Almeida, WFH Senior Director, Operations and Privacy Officer by e-mail at [email protected] or at the following postal address: | |
c/o Privacy Officer, World Federation of Hemophilia 1425, boul. René-Lévesque West Suite 1200 Montreal, Québec H3G 1T7 Canada |
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We have procedures in place to receive and respond to complaints or inquiries about our handling of personal information, our compliance with this Policy and applicable privacy laws. If you are not satisfied with WFH's handling of your personal information, you may file a complaint with WFH. The complaint will be investigated by the WFH Privacy Officer, who will determine whether the handling of the information complies with WFH policies and practices and any other applicable laws. The Privacy Officer will make every reasonable effort to resolve complaints. The person filing the complaint will be informed of any progress or outcome of the investigation within a maximum of 30 working days of receipt of the request and/or any additional time required to complete the investigation. |
APPENDIX A |
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ADDITIONAL TERMS FOR USERS LOCATED IN THE ECONOMIC EUROPEAN AREA (EEA) AND SWITZERLAND | |
If you are located in the European Economic Area (EEA) or Switzerland, these additional terms apply to you in addition to the main terms of WFH Privacy Policy. In case of a contradiction between the Privacy Policy and these additional terms, the latter will prevail. | |
1 | LEGAL BASIS FOR PROCESSING PERSONAL INFORMATION UNDER THE GENERAL DATA PROTECTION REGULATION (GDPR) |
1.1 | If you are from the European Economic Area (EEA) or Switzerland, WFH’s legal basis for collecting and using the personal information described in this Privacy Policy depends on the personal information we collect and the specific context in which we collect it. We only process your Personal information if we have a legal basis to do so, which includes:
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If you have any questions about the lawful bases upon which we collect and use your personal data, please contact: Antonio José Almeida,WFH Senior Director, Operations and Privacy Officer by e-mail at [email protected] or at the following postal address: c/o Privacy Officer, World Federation of Hemophilia, 1425, boul. René-Lévesque, West Suite 1200, Montreal, Québec, H3G 1T7, Canada |
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2 | TRANSFER OF YOUR PERSONAL INFORMATION OUTSIDE OF THE EEA OR SWITZERLAND |
2.1 | We may process information outside of the EEA or Switzerland, including Canada and the USA. |
3 | ADDITIONAL RIGHTS REGARDING YOUR PERSONAL INFORMATION UNDER THE GENERAL DATA PROTECTION REGULATION (GDPR) |
3.1 | If you are a resident of the European Economic Area (EEA) or Switzerland, you have certain data protection rights. WFH aims to take reasonable steps to allow you to correct, amend, delete or limit the use of your personal information. |
3.2 | If you wish to be informed about what personal information we hold about you and if you want it to be removed from our systems, please contact us. |
3.3 | In addition to the rights mentioned in the section 15 ("Accessing, correcting, de-indexing and portability of your personal information") and in section 16 ("Withdrawing your consent"), in certain circumstances, you also have the following data protection right:
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Haga clic aquí para descargar la Política de privacidad de las plataformas digitales de la FMH (PDF).
Fecha de revisión: 27 de noviembre de 2023
The use of all websites and Platforms belonging to the World Federation of Hemophilia (WFH) is subject to the following terms and conditions:
The World Federation of Hemophilia is not responsible for the content of external websites to which its site may link. Throughout our websites and/or Platforms, we provide links to other servers which may contain information of interest to our readers. We assume no responsibility for, and exercise no control over, the organizations, views or accuracy of information contained on other servers. When linking to the WFH, we request that you ensure that there are no associated connections for commercial purposes. If you have a link you’d like us to consider adding to our website, please send an email to [email protected] with the subject “Link request”.
Any communication or material that is publicly transmitted or posted on these other servers, including any data, questions, suggestions, comments or other information, will be treated as non-confidential and non-proprietary information.
Haga clic aquí para descargar las Condiciones de uso de las plataformas digitales de la FMH (PDF).
Fecha de revisión: 15 de septiembre de 2023
¡Anótenlo en sus calendarios! El 13o Foro Mundial de la Federación Mundial de Hemofilia (FMH) tendrá lugar en persona, del 17 al 18 de noviembre de 2023, en el Hotel Fairmont Queen Elizabeth, en la hermosa ciudad de Montreal, Canadá. El foro de este año se centrará en los avances más recientes relacionados con tratamientos y tecnologías para trastornos de la coagulación.
El Foro Mundial de la FMH constituye un evento esencial para cualquier persona interesada en los avances que actualmente moldean a la comunidad mundial de trastornos de la coagulación. Con diversas y novedosas opciones terapéuticas en desarrollo, es momento de una valoración colectiva de estos avances; de identificar sus fortalezas y limitaciones; de determinar lo que facilitará u obstaculizará su adopción, y de evaluar su impacto en los pacientes. El foro abarcará muchos de estos temas y más, entre ellos los siguientes:
El evento de este año contará con un formato actualizado que abarcará una conversación específica sobre terapia génica. Al integrar la terapia génica al Foro Mundial de la FMH, los participantes tendrán la oportunidad de escuchar a líderes expertos en el campo y de participar en las conversaciones en curso sobre lo que actualmente afecta a la atención en nuestro campo.
El Foro Mundial estará copresidido por el doctor Glenn Pierce, PhD, vicepresidente médico de la FMH, y por el doctor Mike Makris.
¡Esperamos darles la bienvenida en Montreal en noviembre próximo!
El Muy Honorable Justin Trudeau, Primer Ministro de Canadá, y François Legault, Primer Ministro de Quebec, dan una calurosa bienvenida a todos los asistentes al 13º Foro Mundial de la FMH, que se celebrará este año en Montreal.
Nota: El 13o Foro Mundial de la FMH se ofrecerá exclusivamente en inglés.
8:15-8:30
OPENING: Welcome
Glenn Pierce, Vice-President – Medical, World Federation of Hemophilia, La Jolla, United States
Mike Makris, Professor, University of Sheffield, Sheffield, United Kingdom
8:30-10:35
SESSION 1: Confronting limitations of therapies
The first 2 sessions of the 13th WFH Global Forum will focus on confronting limitations of therapies for all people with bleeding disorders. Speakers in this session will discuss issues related to plasma, orphan inherited bleeding disorders, treatment of moderate & mild patients, women & girls with bleeding disorders, as well as platelet disorders. The second session will focus on the treatment of hemophilia A and B.
Chair
Glenn Pierce, Vice-President – Medical, World Federation of Hemophilia, La Jolla, United States
Welcome and introductions
Glenn Pierce, Vice-President – Medical, World Federation of Hemophilia, La Jolla, United States
Classification of severity of hemophilia: Do we need a change?
Mike Makris, Professor, University of Sheffield, Sheffield, United Kingdom
Johnny Mahlangu, Professor, University of the Witwatersrand and NHLS, Johannesburg, South Africa
Plasma supply & demand
Brian O’Mahony, CEO, Irish Haemophilia Society, Dublin, Ireland
Orphan inherited bleeding disorders
Magdalena Lewandowska, Adult Hematologist-Oncologist, Indiana Hemophilia and Thrombosis Center (IHTC), Indianapolis, United States
Treatment of moderate and mild patients
Samantha Gouw, Pediatric Hematologist, Amsterdam UMC, Amsterdam, Netherlands
Optimal therapies for women & girls with bleeding disorders
Dawn Rotellini, Chief Operating Officer, National Bleeding Disorders Foundation, Gibsonia, United States
Platelet transfusions & substitutes
Catherine Hayward, Professor, Pathology & Molecular Medicine, McMaster University, Hamilton, Canada
10:35-11:00
BREAK
11:00-12:25
SESSION 2: Confronting limitations of therapies
The first 2 sessions of the 13th WFH Global Forum will focus on confronting limitations of therapies for all people with bleeding disorders. Speakers in this session will focus on the treatment of hemophilia, discussing CFCs, factor VIII mimetics, rebalancing agents, and gene therapy. Issues specific to gene therapy will also be addressed. This will build upon the previous session which will focus on plasma, other bleeding disorders, moderate & gild patients, and women and girls with bleeding disorders.
Chair
Mike Makris, Professor, University of Sheffield, Sheffield, United Kingdom
Welcome and Introductions
Mike Makris, Professor, University of Sheffield, Sheffield, United Kingdom
Limitations of therapies: Hemophilia A (CFCs, GT, factor VIII mimetics)
Margareth Ozelo, Professor, Hemocentro Unicamp, Sao Paulo, Brazil
Limitations of therapies: Hemophilia B (CFCs, GT)
Steven Pipe, Professor of Pediatrics and Pathology, University of Michigan, Ann Arbor, United States
Limitations of therapies: Hemophilia A & B (rebalancing agents)
Pratima Chowdary, Consultant Haematologist, Royal Free Hospital, London, United Kingdom
Real world implications of antibodies & assay issues in gene therapy
Radoslaw Kaczmarek, Assistant Research Professor of Pediatrics, Indiana University School of Medicine, Indiana, United States
12:25-13:25
LUNCH
13:25-14:50
SESSION 3: Inequities in health care delivery
The afternoon of day 1 will focus on inequities in health care delivery and innovative access programs. Following a presentation on the affordability of global bleeding disorders treatment, new therapeutic approaches to optimize treatment in countries with limited resources will be presented. The following session will address issues related to the establishment of gene therapy programs in lower income countries as well as corporate partner innovative access programs.
Chair
David Lillicrap, Professor, Queen’s University, Kingston, Canada
Welcome and introductions
David Lillicrap, Professor, Queen’s University, Kingston, Canada
Affordability of global bleeding disorders treatment
Brian O’Mahony, CEO, Irish Haemophilia Society, Dublin, Ireland
Emicizumab: Low dose or non-standard interval doses
Alfonso Iorio, Professor, Mcmaster University, Hamilton, Canada
Use of bispecific antibodies in low-income countries: Lessons from the humanitarian aid program
Cedric Hermans, Hematologist, Cliniques universitaires Saint-Luc, Brussels, Belgium
Using BT200 (rondaptivon pegol) in countries with limited access to CFCs
James Gilbert, Lexington, United States
Andrea Edginton, Professor and Hallman Director, School of Pharmacy, University of Waterloo, Waterloo, Canada
14:50-15:20
BREAK
15:20-17:05
SESSION 4: Inequities in health care delivery / Innovative access programs
The afternoon of day 1 will focus on inequities in health care delivery and innovative access programs. Speakers in this session will present achievements and challenges of establishing gene therapy trials in different lower income country settings, as well as different corporate partner innovative access programs. This will build upon the previous session which will address affordability and new therapeutic approaches to optimize treatment in countries with limited resources.
Chair
Cedric Hermans, Hematologist, Cliniques universitaires Saint-Luc, Brussels, Belgium
Welcome and introductions
Cedric Hermans, Hematologist, Cliniques universitaires Saint-Luc, Brussels, Belgium
St. Judes – Achievements and challenges in establishing a gene therapy trial in low-income countries
Ulrike Reiss, Associate Member, St. Jude Children’s Research Hospital, Memphis, United States
Achievements and challenges in establishing a gene therapy trial in low-income countries
Alok Srivastava, Professor, Christian Medical College, Vellore, Indiaf
Sanofi – Global Health Access programs
Cecile Le Camus, Global Head of Medical Affairs Rare Diseases, Sanofi Genzyme
Pfizer – ACCORD program
Lisa Wilcox, Global Medical Lead – Hemophilia, Pfizer, Ajax, Canada
Roche – Innovative access strategies for emicizumab
Martynas Aizenas, Global Access Strategy Leader, Roche, Basel, Switzerland
19:00-21:00
RECEPTION
8:15-8:50
SESSION 5: Keynote
Chair
Thomas Sannié Honorary, President Association Française des Hémophiles Paris, France
Welcome and introductions
Thomas Sannié Honorary, President Association Française des Hémophiles Paris, France
Learning from the past, and preparing for the future
André Picard, Health columnist, The Globe and Mail, Vancouver, Canada
8:50-9:55
SESSION 6: WFH Programs
This session will focus on different WFH initiatives and how they address the needs of the global bleeding disorders community, improving and sustaining care for all people with inherited bleeding disorders.
Chair
Miguel Escobar, Professor – Hematology, University of Texas Texas, United States
Welcome and introductions
Miguel Escobar, Professor – Hematology, University of Texas Texas, United States
Humanitarian aid program
Assad Haffar Director – Humanitarian Aid World Federation of Hemophilia Montreal, Canada
WFH registries
Mayss Naccache, Gene Therapy Program Manager, World Federation of Hemophilia, Montreal, Canada
WFH Shared Decision-Making Tool
Donna Coffin, Director – Research & Education, World Federation of Hemophilia, Montreal, Canada
WFH Advocacy: Essential medicine list
Glenn Pierce, Vice-President – Medical, World Federation of Hemophilia, La Jolla, United States
9:55-10:25
BREAK
10:25-11:55
SESSION 7: Gene therapy market access & economics
This session will focus on the market access and economics of gene therapy for hemophilia, in high income countries as well as lower- and middle-income countries. Access pathways in Germany, China, and South Africa will be presented prior to a panel discussion.
Chair
Mark Skinner, President and CEO, Institute for Policy Advancement Ltd, Washington, United States
Welcome and introductions
Mark Skinner, President and CEO, Institute for Policy Advancement Ltd, Washington, United States
Insights from the 1st Health Technology Assessments for hemophilia A & B gene therapy
David Rind, Chief Medical Officer, ICER, Boston, United States
Promoting global access to medical innovation: The challenge for gene therapy in hemophilia
Louis Garrison, Professor, University of Washington, Washington, United States
Access pathway – Germany
Johannes Oldenburg, Director, Institute for Experimental Haematology and Transfusion Medicine, Bonn, Germany
Access pathway – China
Renchi Yang, Head of Thrombosis and Hemostasis Centre, Institute of Hematology and Blood Diseases Hospital, Tianjin, China
Access pathway – South Africa
Johnny Mahlangu, Professor, University of the Witwatersrand and NHLS, Johannesburg, South Africa
11:55-12:40
LUNCH
12:40-15:00
SESSION 8: Hot topics
The hot topics session will provide the community with an opportunity to learn about the latest advances in treatments and technologies for bleeding disorders.
Chair
Flora Peyvandi, President, ISTH, Milan, Italy
Glenn Pierce, Vice-President – Medical, World Federation of Hemophilia, La Jolla, United States
Welcome and introductions
Flora Peyvandi, President, ISTH, Milan, Italy
Glenn Pierce, Vice-President – Medical, World Federation of Hemophilia, La Jolla, United States
DDAVP
Nathan Connell, Assistant Professor of Medicine, Brigham and Women’s Hospital – Harvard Medical School Boston, United States
Pipeline for new VWD therapies
Sophie Susen, Professor, MD, CRC-MHC, Lille University Hospital, Lille, France
nxt007
Keiji Nogami, Professor, MD, Department of Pediatrics – Nara Medical University, Kashihara, Japan
mim8
Steve Lentz, Henry Hamilton Chair in Hematology, The University of Iowa Carver College of Medicine, Iowa City, United States
14:00 – 14:10
Pause
Marstacimab
Davide Matino, Assistant Professor, Thrombosis and Atherosclerosis Research Institute (TaARI) – McMaster University, Hamilton, Canada
Concizumab
Pratima Chowdary, Consultant Haematologist, Royal Free Hospital, London, United Kingdom
Fitusiran
Alok Srivastava, Professor, Christian Medical College, Vellore, India
Gene editing
Meagan O’Brien, Clinical Medical Director Program Lead, Regeneron Pharmaceuticals, Inc., United States
Be Biopharma
Krishnan Viswanadhan, President & Chief Operating Officer, Be Biopharma, Cambridge, United States
15:00-15:10
CLOSING REMARKS
Glenn Pierce, Vice-President – Medical, World Federation of Hemophilia, La Jolla, United States
Mike Makris, Professor, University of Sheffield, Sheffield, United Kingdom
All times are listed in eastern time (ET)
Program is subject to change
Date | Sunday, April 21, 2024 |
Schedule | 6-7pm |
Location | IFEMA Madrid |
Cost | Included for all delegates |
Date | Sunday, April 21, 2024 |
Schedule | 7-9pm |
Location | IFEMA Madrid |
Menu | Beverages and light appetizers will be provided |
Cost | Included for all delegates, 55USD for guests |
Date | Tuesday, April 23, 2024 |
Schedule | 8-10pm |
Location | Offsite venue TBD |
Menu | Beverages and light appetizers will be provided |
Cost | 20USD for everyone |
Show all
Committee
Speakers
Professor, McMaster University
Hamilton, Canada
Professor, Christian Medical College
India
Health columnist, The Globe and Mail
Vancouver, Canada
Professor and Hallman Director, University of Waterloo
Waterloo, Canada
Medical & Humanitarian Aid Director, WFH
Montreal, Canada
CEO, Irish Haemophilia Society
Dublin, Ireland
Professor, Pathology & Molecular Medicine, McMaster University
Hamilton, Canada
Global Head of Hemophilia with Medical Affairs Rare Blood Disorders, Sanofi
Cambridge, United States
Head, Hemophilia Center Cliniques Universitaires Saint-Luc
Brussels, Belgium
Professor, Queen's University
Kingston, Canada
Chief Medical Officer, ICER
Boston, United States
Assistant Professor
Thrombosis and Atherosclerosis Research Institute (TaARI) - McMaster University
Hamilton, Canada
Chief Operating Officer, National Bleeding Disorders Foundation
Gibsonia, United States
Director, Research & Education, WFH
Montreal, Canada
President, ISTH
Milan, Italy
Vice-President, Medical, WFH
United States
Lexington, United States
Director, Institute for Experimental Haematology and Transfusion Medicine
Bonn, Germany
Professor, University of the Witwatersrand and NHLS
Johannesburg, South Africa
Professor, MD, Department of Pediatrics - Nara Medical University
Kashihara, Japan
President & Chief Operating Officer, Be Biopharma
Cambridge, United States
Assistant Professor, Perelman School of Medicine, University of Pennsylvania and Director of Clinical In Vivo Gene Therapy, Children’s Hospital
Philadelphia, United States
Global Medical Lead - Hemophilia, Pfizer
Greater Toronto Area, Canada
Professor, University of Washington
Washington, United States
Adult Hematologist-Oncologist, Indiana Hemophilia and Thrombosis Center (IHTC)
Indianapolis, United States
Professor, Hemocentro Unicamp
Sao Paulo, Brazil
President and CEO, Institute for Policy Advancement Ltd
Global Access Strategy Leader, Roche
Basel, Switzerland
Head - Gene Therapy Program, WFH
Montreal, Canada
Clinical Medical Director Program Lead, Regeneron Pharmaceuticals, Inc.
United States
Professor, University of Texas
Austin, United States
Professor, University of Sheffield
United Kingdom
Assistant Professor of Medicine, Brigham and Women's Faulkner Hospital
Boston, United States
Consultant Haematologist, Royal Free Hospital
London, United Kingdom
Assistant Research Professor of Pediatrics Wells Center for Pediatric Research, Indiana University School of Medicine
Indianapolis, United States
Head of Thrombosis and Hemostasis Centre
Institute of Hematology and Blood Diseases Hospital
Tianjin, China
Director, Global Development, WFH
Montreal, Canada
Pediatric Hematologist, Amsterdam UMC
Amsterdam, Netherlands
Director of the Department of Haemostasis & Transfusion, CHRU Lille
Lille, France
Henry Hamilton Chair in Hematology, The University of Iowa Carver College of Medicine
Iowa City, United States
Professor Pediatric Hematology/Oncology, Michigan Medicine Hemophilia/Coagulation
Ann Arbor, United States
Honorary President, Association Française des Hémophiles
France
Director, Pediatric Hemophilia Treatment Center - St. Jude Children’s Research Hospital.
United States
Cecile Le Camus is Global Head of Hemophilia with Medical Affairs Rare Blood Disorders at Sanofi, based in Cambridge MA, USA. After 8 years in clinical practice, primarily as an ER clinician, in sports medicine and mountain rescue, Cecile joined the industry 20+ years ago. Cecile has held roles with Sanofi and Roche in France before joining Vertex in 2003., taking on roles of growing responsibility. Cecile joined their Boston Headquarters in 2015 as Global Medical Lead for Cystic Fibrosis, and went on to head their US Medical Affairs, supporting successful launches. In 2021 Cecile joined Sanofi as Global Medical Head for Hemophilia. Cecile is most passionate about including the patient voice, developing effective partnerships with key stakeholders, generating evidence and education that enable healthcare providers, payers and policymakers to make informed decisions for better patient outcomes with a true commitment to patient access to the therapies they need wherever they live.
Martynas Aizenas, is the Global Access Strategy Leader for Hematology at Roche is responsible for enabling comprehensive and equitable access for the portfolio of products. Martynas Aizenas has over 15 years of broad cross-functional experience in multiple countries and disease areas in advancing new medicines both locally and globally. For the last 5 years Martynas was leading Roche Global Haemophilia Access strategy.
Professor Chowdary is a Professor of Haemophilia and Haemostasis at Dept. of Haematology, University College of London (UCL) and Centre Director for the Katharine Dormandy Haemophilia & Thrombosis Centre, Royal Free Hospital. In addition, she is the Chairperson for the United Kingdom Haemophilia Centre Doctors Organisation and is co-director of the National Haemophilia Database. Her clinical interests include the care of patients with Haemophilia and related bleeding disorders. Her primary research interests focus on strategies for the personalised management of haemophilia, novel therapies in haemophilia, acquired coagulopathy and bleeding. She is an active clinical researcher and is the chief investigator for several non-interventional and interventional studies, including the UK EHL registry and UCL-sponsored gene therapy studies in haemophilia A and B. She has authored more than 100 peer-reviewed publications, including three textbook chapters. She is a chair and member of various national and international working parties, data safety monitoring boards, trial steering committees, and national research peer review panels. She is also a member of numerous professional societies, including the International Society on Thrombosis and Haemostasis, the British Society of Haemostasis and Thrombosis, the European Association of Allied Bleeding disorders and the World Federation of Haemophilia.
Donna Coffin, MSc is currently the Director, Research & Education at the World Federation of Hemophilia (WFH) in Montreal, Canada. Donna is an epidemiologist, trained at McGill University in Montreal, and has spent much of her career conducting evidence based research for health care and regulatory agencies around the world. Since joining the WFH in 2016, Donna has established the Research & Education department, with focus on the development and implementation of the World Bleeding Disorders Registry. Her team is also responsible for all WFH research activities, including the WFH Annual Global Survey, the WFH Clinical Research Grant Program, and the production of evidence-based advocacy tools used to promote treatment for all.
Dr. Nathan Connell is Chief of Medicine at Brigham and Women’s Faulkner Hospital, Vice Chair of Medicine at Brigham and Women’s Hospital, Associate Director of the Boston Hemophilia Center, and Associate Professor of Medicine at Harvard Medical School. His clinical practice focuses on inherited bleeding disorders and he researches cost-effective strategies for the diagnosis and management of hematologic diseases. A graduate of Cornell University, the University of Miami School of Medicine, and the Harvard School of Public Health, he completed an internal medicine residency and a hematology/oncology fellowship at Brown University. In addition to his work defining the field of systems-based hematology, he co-chaired the ASH ISTH NHF WFH Guidelines on the Diagnosis and Management of von Willebrand disease.
Dr. Andrea Edginton is a Professor and the Hallman Director of the School of Pharmacy, University of Waterloo, Canada. She has 120+ peer-reviewed publications in pharmacokinetics and modeling and simulation. Her academic research focuses on the development and application of physiologically-based pharmacokinetic (PBPK) models and simulation techniques in the areas of pharmaceuticals and human health risk assessment. Her research examines how the physiology of sub-populations (e.g. children, patients with disease) affect the PK of drugs through integration with PBPK models for the optimization of drug therapy. Dr. Edginton heads the modeling component of the Web-Accessible Population Pharmacokinetics Service – Hemophilia (WAPPS-Hemo.org) project that uses population pharmacokinetic modeling and Bayesian forecasting for tailoring treatment prophylaxis in persons with hemophilia. This free service is used by over 600 hemophilia treatment centres in over 40 countries. As a result of her research in hemophilia, she sits on the International Prophylaxis Study Group (IPSG) PK Expert Working Group.
Miguel Escobar is tenured Professor of Internal Medicine and Pediatrics at the University of Texas Health Science Center, MD Anderson Cancer Center and the McGovern Medical School in Houston, Texas. He is also the Director of the Gulf States Hemophilia and Thrombophilia Center, the Clinical Research Center at the University and the Medication, Therapy and Wellness Center at the Memorial Hermann Hospital in Houston. Dr Escobar received his MD from the Universidad Libre in Cali, Colombia and did his residency in Internal Medicine at the University of Connecticut and fellowship in hematology/oncology at the University of North Carolina at Chapel Hill, USA. Dr Escobar has been involved in many clinical studies, resulting in a range of publications and is a member of several professional organisations. He is a member of the World Federation of Hemophilia Board of Directors and Chair of the Scientific and Standardization Subcommittee on FVIII/FIX & rare coagulation disorders for the ISTH. His main research interest is in haemophilia, congenital and acquired inhibitors and other coagulation deficiencies.
Dr. Lindsey George is an Assistant Professor of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania and Director of Clinical In Vivo Gene Therapy at the Children’s Hospital of Philadelphia. Her laboratory studies the molecular basis of coagulation that in diminished or excess functional states leads to disorders of hemostasis and thrombosis, respectively. The work is particularly interested in the intrinsic tenase enzyme complex that, in deficiency states, results in hemophilia A or B. The current primary focus of her lab is the regulation of factor VIII cofactor function with the goal of exploiting our biochemical understanding to develop gene based therapies for hemophilia A. She is additionally interested in understanding the mechanistic basis of translational questions that have emerged from hemophilia gene therapy clinical trials. She was previously the lead clinical principal investigator of early phase hemophilia A and B adeno-associated virus-mediated gene addition trials. Lastly, as the director of the Clinical In Vivo Gene Therapy at the Children's Hospital of Philadelphia, this group long-term aims to safely and efficiently advance translational and clinical research for in vivo gene therapy for children with genetic disorders.
Lou Garrison, PhD, is Professor Emeritus in The Comparative Health Outcomes, Policy, and Economics Institute in the School of Pharmacy at the University of Washington, where he joined the faculty in 2004. He is also a Visiting Senior Fellow at the Office of Health Economics in London following his sabbatical there in 2012-13. For the first 13 years of his career, he worked in non-profit health policy. Following this, he worked as an economist in the pharmaceutical industry for 12 years. He received a PhD in Economics from Stanford University and has more than 200 publications in peer-reviewed journals. His research interests include national and international health policy issues related to health technology assessment, personalized medicine, benefit-risk analysis, and other topics, as well as the economic evaluation of pharmaceuticals, diagnostics, and other technologies. Dr. Garrison was elected as ISPOR President for July 2016-June 2017, and currently serves as co-chair of ISPOR’s Policy Outlook Committee for the Health Science Policy Council. In September 2022, he was announced as the recipient of the 2022 Avedis Donabedian Outcomes Research Lifetime Achievement Award from ISPOR.
Dr. Lindsey George is an Assistant Professor of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania and Director of Clinical In Vivo Gene Therapy at the Children’s Hospital of Philadelphia. Her laboratory studies the molecular basis of coagulation that in diminished or excess functional states leads to disorders of hemostasis and thrombosis, respectively. The work is particularly interested in the intrinsic tenase enzyme complex that, in deficiency states, results in hemophilia A or B. The current primary focus of her lab is the regulation of factor VIII cofactor function with the goal of exploiting our biochemical understanding to develop gene based therapies for hemophilia A. She is additionally interested in understanding the mechanistic basis of translational questions that have emerged from hemophilia gene therapy clinical trials. She was previously the lead clinical principal investigator of early phase hemophilia A and B adeno-associated virus-mediated gene addition trials. Lastly, as the director of the Clinical In Vivo Gene Therapy at the Children's Hospital of Philadelphia, this group long-term aims to safely and efficiently advance translational and clinical research for in vivo gene therapy for children with genetic disorders.
Co-Founder and CEO of Guardian Therapeutics, Inc., and Co-Founder and Managing Director of Band Therapeutics, LLC Board Certified American Board of Internal Medicine since 1988 MD from University of Connecticut 1984 BS from Yale University 1980 Selected Bibliography:
1. Kovacevic KD, Grafeneder J, Schörgenhofer C, et al. The von Willebrand factor A-1 domain binding aptamer BT200 elevates plasma levels of von Willebrand factor and factor VIII: a first-in-human trial. Haematologica 2022;107(9):2121-2132.
2. Gelbenegger G, Schoergenhofer C, Derhaschnig U, et al. Inhibition of complement C1s in patients with cold agglutinin disease: lessons learned from a named patient program. Blood Adv 2020;4(6):997-1005.
3. Jäger U, D'Sa S, Schörgenhofer C, et al. Inhibition of complement C1s improves severe hemolytic anemia in cold agglutinin disease: a first-in-human trial. Blood 2019;133(9):893-901
4. Bartko J, Schoergenhofer C, Schwameis M, et al. A Randomized, First-in-Human, Healthy Volunteer Trial of sutimlimab, a Humanized Antibody for the Specific Inhibition of the Classical Complement Pathway. Clin Pharmacol Ther 2018;104(4):655-663.
5. Cataland SR, Peyvandi F, Mannucci PM, et al. Initial experience from a double-blind, placebo-controlled, clinical outcome study of ARC1779 in patients with thrombotic thrombocytopenic purpura. Am J Hematol 2012;87(4):430-2
6. Jilma-Stohlawetz P, Gorczyca ME, Jilma B, Siller-Matula J, Gilbert JC, Knöbl P. Inhibition of von Willebrand factor by ARC1779 in patients with acute thrombotic thrombocytopenic purpura. Thromb Haemost 2011;105(3):545-52.
7. Jilma-Stohlawetz P, Gilbert JC, Gorczyca ME, Knöbl P, Jilma B. A dose ranging phase I/II trial of the von Willebrand factor inhibiting aptamer ARC1779 in patients with congenital thrombotic thrombocytopenic purpura. Thromb Haemost 2011;106(3):539-47
8. Arzamendi D, Dandachli F, Théorêt JF, et al. An anti-von Willebrand factor aptamer reduces platelet adhesion among patients receiving aspirin and clopidogrel in an ex vivo shear-induced arterial thrombosis. Clin Appl Thromb Hemost 2011;17(6):E70-8.
Samantha C. Gouw, MD, PhD is trained as a pediatric hematologist and clinical epidemiologist. She received her PhD doctorate on the etiology of inhibitor development in children with severe hemophilia A at Utrecht University in 2011. She currently works as a clinician-researcher at the Department of Pediatric Hematology at the Amsterdam University Medical Center. She is the coordinating researcher of a nationwide study and biobank in hemophilia patients at the Department of Clinical Epidemiology at Leiden University Medical center, The Netherlands and is a work package leader in the National Symphony Consortium. She is the lead of the Dutch Hemophilia Patient Registry, and board member of the Dutch Hemophilia Physicians Association and European Association of Hemophilia and Allied Disorders. Her current research focuses on inhibitor development and immune tolerance induction and the quality of hemophilia care, especially e-health and value based health care.
Assad Haffar is currently the Medical and Humanitarian Aid Director at the World Federation of Hemophilia (WFH) based in Montreal, Canada. Dr Haffar earned his MD at the University of Damascus in Damascus, Syria. He subsequently studied at the London School of Hygiene and Tropical Medicine, University of LONDON, London, UK, for his Master of Science in occupational medicine and at the University of Environmental and Occupational Health in Kitakyushu City, Japan, for his Diploma in industrial health.
During his career at the International Labor Organization (ILO), Geneva, Switzerland (1990–1995), he coordinated a large program to improve occupational health services and workers education in selected Middle East countries.
Dr Haffar has worked as coordinator for several projects related to occupational health at the Montreal Re-Adaptation Institute and the McGill University in Montreal, Canada.
Since Joining WFH in 2000, Dr Haffar has been involved in several activities, including twinning partnerships, symposia and workshops in the Middle East and African Region. In addition to leading the Humanitarian Aid Department responsible for the WFH Humanitarian Aid Program which is considered the largest global humanitarian aid program that channels clotting factor concentrates to countries where people with hemophilia have limited access to these products, Dr Haffar assisted many countries in the Middle East and African region in joining and becoming members of the WFH, in developing National Hemophilia Care Programs and in establishing the comprehensive care approach in different hemophilia treatment centers. Since becoming the WFH Medical Director in 2018, he designed and led many WFH medical activities.
Dr. Hamed is the Global Head of Medical for Rare Disease and Rare Blood Disorders. Alaa and his team are responsible for expanding the strong legacy of Medical Leadership in Sanofi Genzyme Rare Disease, focusing on new evidence generation strategies, providing medical insights to product development, and ensuring effective and meaningful Medical engagement with Rare Disease stakeholders around the world. With a central focus on patient outcomes, and in strong partnerships with external experts and stakeholders, he has spearheaded the development of numerous innovative disease-specific clinical outcome assessments, while regularly representing the company in multiple congress, industry, regulatory, and HTA interactions. Dr. Hamed has been with Sanofi Genzyme for 10 years, prior to that he held various positions in Academia and biotech in HEOR, Medical, Clinical, Regulatory, and Health Services Research. His research has resulted in numerous high-impact publications authored in collaboration with key external experts, and he serves as a reviewer for multiple journals. He holds an MD from Cairo University and both and MBA and MPH from Boston University.
Dr. Hayward is an MD PhD and clinical and laboratory hematologist who is Professor of Pathology and Molecular Medicine, and Medicine, at McMaster University, and the Head of Coagulation for the Hamilton Regional Laboratory Medicine Program in Canada. Dr. Hayward has published extensively, with an H-index of 52 and over 10,000 citations. She is considered an expert on platelet disorders and the clinical and laboratory diagnostic evaluation of bleeding disorders. Dr. Hayward is the Immediate Past President of the Thrombosis Hemostasis Societies of North America (THSNA) and is also a Past President of the International Society for Laboratory Hematology (ISLH) and the North American Specialized Coagulation Laboratory Association. She is the Director of the McMaster University Fellowship Programs in Advanced Laboratory Coagulation/Hemostasis and Advanced Clinical and Laboratory Coagulation/Hemostasis and supervises Hematology and General Pathology Trainees during their Coagulation Rotation. As a clinician scientist, Dr. Hayward has received many honors and awards, including the Gold Medal award from McMaster University and from the Royal College of Physician and Surgeons of Canada.
Cedric Hermans currently heads the Division of Haematology, the Hemostasis and Thrombosis Unit as well as the Hemophilia Center of the Saint-Luc University Hospital in Brussels, Belgium. He was appointed Associate Professor at the Medical School of the Catholic University of Louvain in 2003, Full Professor in 2012 and Vice-Dean in 2015. Professor Hermans has (co)-authored more than 40 original articles in international journals and is a member of several scientific societies and international advisory boards and collaborative research projects. He is Member of the Royal Academy of Medicine of Belgium and Fellow of the Royal Colleges of Physicians of London and Edinburgh.He was president of EAHAD and is currently member of the Board of Directors of the World Federation of Haemophilia and the Editor-in-Chief of the Haemophilia Journal. His main research interests lie in the area of haemostasis and thrombosis, especially clinical studies on the treatment modalities and the wide spectrum of complications of haemophilia in both developed and developing countries, as well as new anticoagulants and the management of thrombosis.
Alfonso Iorio, MD, PhD, FRCP(C) Department of Health Research Methods, Evidence and Impact & Department of Medicine, McMaster University, Canada Alfonso Iorio is a Professor and Chair Department of Health Research Methods, Evidence, and Impact at McMaster University Canada. He is Director of the Health Information Research Unit (HiRU, http://hiru.mcmaster.ca/hiru) and the Hamilton-Niagara Hemophilia Program. He received his medical and Ph.D. degrees from the University of Perugia, Italy. He is the Principal Investigator of the Web Application for Population Pharmacokinetic in Hemophilia (WAPPS) project (www.wapps-hemo.org), co-investigator of the Patient Reported Outcomes, Burden, and Experiences (PROBE), and Chair of the Canadian Bleeding Disorders Registry (CBDR). He is the past chair of the WFH Data and Demographics Committee and co-chair of the World Bleeding Disorders Registry (WBDR). He is Associate Editor for bleeding disorders of the Cochrane Collaboration, Thrombosis Research. He serves on the Editorial Boards of numerous journals, including the Journal of Thrombosis and Haemostasis, and Haemophilia. Outside Hemophilia, his current research interests include internet-based knowledge dissemination, systematic review and meta-analysis methodology, risk prediction and stratification, and artificial intelligence application to all of them. He has authored over 300 peer-reviewed papers totalling over 20,000 citations and an H-index of 59 (details available on his personal page Google Scholar). He has given many lectures, including educational lectures at many international conferences.
Dr. Radek Kaczmarek is an Assistant Research Professor of Pediatrics at Gene and Cell Therapy Group, Wells Center for Pediatric Research, Indiana University School of Medicine (Indianapolis, IN). He completed his PhD at Hirszfeld Institute of Immunology and Experimental Therapy in Wroclaw, Poland. His research interests include immune responses to gene and protein replacement therapies for hemophilia A and B. Radek chairs the Coagulation Products Safety, Supply and Access (CPSSA) Committee of the World Federation of Hemophilia (WFH), is a member of the Scientific and Standardization Committee (SSC) Gene Therapy Working Group of the International Society on Thrombosis and Hemostatis (ISTH) and a member of the Medical and Scientific Advisory Group of the European Haemophilia Consortium (EHC).
Steven Lentz, MD, PhD Professor University of Iowa Iowa, United States Steven Lentz is the Henry Hamilton Chair in Hematology and the former Chief of the Hematology Section at the University of Iowa in Iowa, United States. Dr Lentz is recognised for his research on mechanisms of haemostasis, thrombosis and vascular dysfunction. Dr Lentz directs a translational and clinical investigation program in hemostasis and thrombosis, and he has served as the principal investigator of numerous clinical trials in von Willebrand disease, haemophilia and thrombosis at the Iowa Hemophilia and Thrombosis Center. He has mentored many pre-doctoral and post-doctoral trainees and directs training programs in hematology and medical scientist (MD-PhD) career development.
Dr. Magdalena Lewandowska serves as an adult hematologist at the Indiana Hemophilia and Thrombosis Center in Indianapolis, IN. She graduated from Jagiellonian University in Cracow, Poland, and completed postgraduate medical education in Internal Medicine and Hematology/Oncology at St. Elizabeth’s Medical Center in Boston, MA. She is involved in medical education and clinical research, with a special interest in hemophilia, rare bleeding disorders, thrombosis, and taking care of women with bleeding disorders.
David Lillicrap is a Professor in the Department of Pathology and Molecular Medicine at Queen’s University, Kingston, Canada. He is the recipient of a Canada Research Chair in Molecular Hemostasis. Dr. Lillicrap is a member of the World Federation of Hemophilia’s (WFH) Medical Advisory Board and is the Chair of the WFH’s Research Committee. He is the Immediate Past Chairman of the International Society for Thrombosis and Haemostasis’ Scientific and Standardization Committee, and is a member of the Council of ISTH. Dr. Lillicrap’s research interests are centered on molecular aspects of the hemostatic system with particular emphasis on the potential of molecular genetics and molecular biology to address questions relating to pathological hemostasis. The main foci of interest of his research group are the development and evaluation of novel therapies for hemophilia A, investigation of the immune response to FVIII and characterization of the biology and pathobiology of von Willebrand factor.
Johnny Mahlangu is a Professor in Haematology and Head of Department of Molecualr Medicine and Haematology in the Faculty of Health Sciences of the University of the Witwatersrand and the National Health Laboratory Service. He is also a Consultant Clinical Haematologist in Charge of the Haematology at the Charlotte Maxeke Johannesburg Academic Hospital and Director of the International Haemophilia Training Centre in Johannesburg. Johnny received his undergraduate and postgraduate training in science and medicine at the University of the Witwatersrand with haematology specialist and clinical haematology sub-specialist qualifications through the Colleges of Medicine of South Africa. He has published manyand presented over 500 abstracts, plenaries and key-note addresses at national and international meetings. His main area of research is novel therapies in bleeding disorders in which he has served as Principal Investigator for many international multicentre studies. Prof Mahlangu is current President of the College of Pathologists in South Africa and Chair of the South African Medical Research Council Board and Chair of the International Society on Haemostasis and thrombosis scientific and standardization Committee on Factor VIII, FIX and rare bleeding disorders.
Professor Michael Makris MD Michael Makris is emeritus professor of haemostasis and thrombosis at the University of Sheffield. He is a past president of the European Association for Haemophilia and Allied Disorders (EAHAD). Professor Makris is the project lead for the EUHASS bleeding disorder adverse event reporting scheme in Europe. He is on the Editorial Board of the British Journal of Haematology, Journal of Thrombosis and Haemostasis, Seminars in Thrombosis and Haemostasis, and Blood Transfusion. He is currently associate editor of Research and Practice in Thrombosis and Haemostasis and will be taking over as Editor-in-Chief for this journal in January 2024.
Salome Mekhuzla, WFH Director, Global Development leads a team responsible for implementing various healthcare development and capacity-building programs around the globe. Originally from the country of Georgia, her prior experience while working with European and US-based international NGOs on civil society development, advocacy and inter-ethnic relations in the South Caucasus region serves her well in her current role. She holds a MSocSc degree in Transformation in South Caucasus from Tbilisi State University, Center for Social Sciences and a MSc in Nationalism Studies from the University of Edinburgh. Her work takes her many places and she loves the multicultural nature of the WFH, believing it is this diversity that give our community such great strength.
Mayss Naccache is currently sector Head, Gene Therapy Program within the Research & Education department of the World Federation of Hemophilia. Since joining the WFH in 2017, Mayss managed the launch of the World Bleeding Disorders Registry, the development of the Gene Therapy registry, and the organization of the Gene Therapy Round Table series and Global Forum meetings. Mayss holds a Masters in genetics and recently completed her MBA.
Brief biography
1991. Graduation. Jichi Medical University (MD)
2000. Nara Medical University, Graduate School of Medicine (PhD)
2002. Postdoctoral fellow (PJ Fay Lab.). University of Rochester, NY, USA
2012. Associate Professor. Department of Pediatrics, Nara Medical University
2021. Professor. Department of Pediatrics, Nara Medical University Specialty Structure and function analysis of FVIII, VWF, emicizumab Characterization of clotting factor inhibitor Clinic on hemophilia and other bleeding disorders Society Director, The Japanese Society on Thrombosis and Hemostasis Councilor, The Japanese Society of Hematology, The Japanese Pediatric Society Associate Editor, Thrombosis Journal Awards The Japanese Society on Thrombosis and Hemostasis - Researcher’s Award (2000) Bayer Hemophilia Foundation - Special Project Award (2009, 2013) Japan Bioindustry Association - Bioindustry Award “Emicizumab” (2020)
Meagan O’Brien is a Senior Medical Director in Early Clinical Development and Clinical Experimental Sciences at Regeneron Pharmaceuticals. Dr. O’Brien received her medical degree from Harvard Medical School and completed medical residency and a fellowship in infectious diseases in New York City at Columbia Presbyterian and New York University Medical Schools, respectively. Dr. O’Brien practiced medicine in New York City, US for 15 years and conducted basic science, translational, and clinical academic research prior to joining Regeneron in 2017 to work in Early Clinical development, with a focus on immunology, allergy, infectious diseases, and rare disease. Dr. O’Brien has led Phase 1, Phase 2, and Phase 3 studies involving investigational products targeting allergic diseases and COVID-19, respectively, and is a clinical liason for discovery related to genetic medicines, infectious diseases, and allergy. Dr. O’Brien is the clinical lead for the First in Human CRISPR-based Factor 9 gene insertion study for Hemophilia B which is being developed by Regeneron and Intellia Therapeutics.
Brian O’Mahony is Chief Executive of the Irish Haemophilia Society. He represents the society on the statutory National Haemophilia Council, the statutory Hepatitis C Consultative Council and he is the Vice Chair of the Tender Commission established by the Irish Government for the Procurement of Factor Concentrates and haemophilia medications. He previously served as Chair of the Irish Haemophilia Society for 17 years from 1987 to 2003. He served as President of the European Haemophilia Consortium (EHC) for 8 years from 2011 to 2019 and as President of the World Federation of Hemophilia (WFH) for 10 years from 1994 to 2004. He is currently a member of the Coagulation Product Safety Supply and Access (CPSSA) committee of the WFH and of the Medical and Scientific Advisory Group (MASAG) of the EHC. His publications for WFH include Monographs on Advocacy, Developing Haemophilia Organisations, Economics and Health Technology Assessments and A Guidebook on National Tender Systems. He is the author or co-author of more than 80 peer reviewed journal articles, and he is an ad-hoc reviewer for the journal Haemophilia. He is a Fellow of the Academy of Clinical Science and Laboratory Medicine (Ireland) and a Fellow of the Institute of Biomedical Sciences (UK). He has post graduate qualifications in Management and in Occupational Health and Safety and is currently an assistant adjunct Professor in Health Service Management in Trinity College, Dublin. Brian O’Mahony has severe Haemophilia B and is participating in a Gene Therapy clinical trial.
Professor Johannes Oldenburg is the Director of the Institute of Experimental Haematology and Transfusion Medicine and the Haemophilia Centre at the University Clinic in Bonn, Germany. He is a Member of the Blood Committee for the German Ministry of Health. He is also a Member of the Editorial Boards for Blood, The Journal of Thrombosis and Haemostasis and Haemophilia. In 1988, he completed his medical degree at the University of Bonn. He completed his specialty training in Transfusion Medicine and became a Lecturer at the Institute of Experimental Haematology and Transfusion at the University of Bonn. He also completed specialty training in Medical Genetics at the University of Wuerzburg, where he became a Senior Lecturer at the Institute of Human Genetics until 2000. Prior to his current position, he served as Assistant Professor and leader of the research group ‘Molecular Haemostasis’ at the Institute of Experimental Haematology and Transfusion Medicine at the University of Bonn, and as Head of the Departments of Immune Haematology and Molecular Haemostasis at the Institute of Transfusion Medicine and Immune Haematology in Frankfurt. Professor Oldenburg has a research interest in the molecular genetics of blood coagulation factors, in haemophilia and vitamin K pathways.
Dr. Ozelo is Associate Professor of Internal Medicine Department and Director of Haematology and Transfusion Medicine from the University of Campinas (UNICAMP) in Campinas, São Paulo, Brazil. She received her medical degree (1994), specialist training in haematology and transfusion medicine (1994-1997), and Ph.D. (2004) at UNICAMP before undertaking a postdoctoral fellowship in David Lillicrap’s laboratory, at Queen’s University in Kingston, Ontario, Canada, focused on gene therapy for hemophilia (2006–2009). She is also Director of the WFH International Haemophilia Training Centre (IHTC) from Hemocentro UNICAMP. In 2012, she was nominated as a member of the Novo Nordisk Haemophilia Foundation Council and was member of the Executive Committee of the World Federation of Haemophilia from 2012 to 2014. Dr. Ozelo is involved with several research projects, including gene therapy for haemophilia, risk factors for inhibitor development, immune tolerance induction, and the management of musculoskeletal complications of haemophilia, and inherited platelet disorders.
Flora Peyvandi MD, PhD is full professor of Internal Medicine at the University of Milan, Italy and director of the Angelo Bianchi Bonomi Hemophilia and Thrombosis Center of the Milan Policlinic Hospital, Italy. Her research started with molecular and biochemical characterization of coagulation disorders aiming at the development of novel treatment for the affected patients. Her research continued with the understanding of the microvascular dysfunctions in order to implement/develop and standardize innovative diagnostic and therapeutic strategies. Since many years, Dr. Peyvandi has been participating in clinical, educational and research activities of different European and International scientific societies and patients’ organizations. She is currently the President of the International Society of Thrombosis and Haemostasis and Past-President of the Executive Committee of the European Association for Haemophilia and Allied Disorders. She also serves as advisor on the European Agency of Medicine and on the Technical Health Committee of the Italian Ministry of Health. Her clinical, teaching and research experience combined with her life in different countries, led her to familiarize with patient management, scientific projects and educational systems of different parts of the world.
André Picard is the health columnist at The Globe and Mail, Canada’s national newspaper, where he has been a staff writer since 1987. He is also the author of six bestselling books, including “The Gift of Death: Confronting Canada’s Tainted Blood Tragedy.” The book was also the basis of the mini-series "Unspeakable," about the tainted blood scandal. Mr. Picard has received much acclaim for his writing, including the Centennial Prize of the Pan-American Organization, awarded to top health journalist in the Americas. His work has also been recognized by a number of health advocacy groups, including being named Canada’s first “Public Health Hero” by the Canadian Public Health Association, and as a “Champion of Mental Health” by the Canadian Alliance on Mental Illness and Mental Health. He was also a recipient of the Queen Elizabeth II Diamond Jubilee Medal for his dedication to improving healthcare. Mr. Picard is a graduate of the University of Ottawa and Carleton University. He has received honorary doctorates from eight universities, including the University of Toronto and the University of British Columbia. He lives in Vancouver.
Dr. Glenn Pierce currently serves on the WFH as VP Medical and WFH USA Board of Directors and NHF (US) Medical and Scientific Advisory Council. He is an Entrepreneur-in-residence at Third Rock Ventures, and a biotech consultant in the gene therapy and hematological areas.
Dr Steven Pipe is a Professor and the Laurence A. Boxer Research Professor of Pediatrics and Professor of Pathology at the University of Michigan, Ann Arbor, Michigan, USA. He is the medical director of the Pediatric Hemophilia and Coagulation Disorders Program and medical director of the Special Coagulation Laboratory. His clinical interests include bleeding and thrombotic disorders and congenital vascular anomalies. Dr Pipe also directs a basic research lab investigating coagulation factor VIII and the molecular mechanisms of hemophilia A. He has been actively involved in clinical trials with novel therapeutics for hemophilia including gene therapy. He was the 2015 recipient of the Leadership in Research Award from the National Hemophilia Foundation. He has served on the Board of Directors for the Hemostasis and Thrombosis Research Society, as Chair of the Board of Directors for the American Thrombosis and Hemostasis Network and most recently as Chair of the Medical and Scientific Advisory Committee to the National Bleeding Disorders Foundation.
I am an Associate Member in the Department of Hematology and Director of the Pediatric Hemophilia Treatment Center at St. Jude Children’s Research Hospital. I have secondary appointments as at University of Tennessee and St. Jude Pathology. I trained in Pediatrics, Pediatric Nephrology and Transplantation Immunology, and Pediatric Hematology/Oncology at the Universities of Heidelberg and Ulm in Germany, and at State University of New York, Stony Brook, and Children’s Hospital Oakland in the US. I trained in laboratory research for four years at Children’s Hospital Oakland Research Institute. I now have more than 25 years clinical experience in pediatric hematology. At St. Jude I work in clinical care, teaching and clinical research. From 2011-2018 I was Director of the Division of Clinical Hematology. I also have built and received accreditation for the St. Jude HTC. Our comprehensive HTC sees about 400 patients yearly. In research, I have been PI/Co-PI of the pivotal, first successful phase I/II clinical trial of AAV-mediated gene therapy for hemophilia B between St. Jude and University College London (UCL) and the UCL/St. Jude FVIII gene therapy phase I/II trial. I am developing a trial of AAV-mediated gene therapy for hemophilia B to establish safety and efficacy data across multiple patient cohorts globally, including from lower-income and higher-income regions, with the goal to accelerate widespread access. Within this novel program we also assess the educational needs of patients and staff, the cost-effectiveness, and the operational needs related to hemophilia gene therapy. I am also collaborating with ATHN, NBDF, WFH, ASGCT and the Regional HTC Network in clinical outcomes research or the development of clinical guidelines, research blueprints, or educational offerings.
Dr. Rind is Chief Medical Officer of the Institute for Clinical and Economic Review. He is responsible for leading teams conducting analyses and critical appraisals of medical evidence across a wide range of clinical interventions including ICER reviews of therapies for hemophilia. Dr. Rind has expertise in evidence-based medicine and is a member of the international GRADE Working Group. Before joining ICER, Dr. Rind was Vice President, Editorial and Evidence-Based Medicine at UpTodate and was responsible for training UpToDate’s physician editors in clinical epidemiology, biostatistics, and evidence-based medicine. He continues to work with UpToDate as a section editor for general medicine. Dr. Rind received a B.A. in chemistry from Yale University and his M.D. from the University of Rochester. He completed his residency in internal medicine at the University of Massachusetts Medical Center and then did a joint fellowship in general internal medicine and clinical computing at Beth Israel Hospital and Harvard Medical School. He received a Master of Science in health policy and management from the Harvard School of Public Health. Dr. Rind continues to see patients as an academic primary care physician working with internal medicine residents in the outpatient practice at Beth Israel Deaconess Medical Center.
Dawn has been a leader in the bleeding disorders community for many years. As a parent of a son with hemophilia, she founded the Rocky Mountain Hemophilia & Bleeding Disorders Association in Bozeman, Montana, served as its Executive Director, and began their Family Camp. After moving to Pittsburgh, Pennsylvania, she served as a board member for the Hemophilia Center of Western Pennsylvania for six years and then as Executive Director of the Western Pennsylvania Chapter. She has been with the National Bleeding Disorders Foundation (formerly named National Hemophilia Foundation) for 15 years and serves as Chief Operating Officer. Dawn serves on the Board of Directors for the World Federation of Hemophilia and World Federation of Hemophilia USA. Dawn proudly chairs the Women and Girls with Bleeding Disorders and the Hemophilia Organization Twin Committees for WFH. She holds a Bachelor of Science from Montana State University in Bozeman.
Thomas Sannié is the former President of the Association française des hémophiles (2012-2018) and Honorary President since. He is chairman of the Afath program in collaboration with the World Federation of Hemophilia to develop access to care and patient’s organization in French speaking African countries. He is a former lawyer. Today, he is the manager of projects of patients’ partnership in care in Paris region. He has been working for more than 10 years on educational program for and with patients with chronicle diseases and rare bleeding disorders. He has engaged in several pilot programs with universities to train young medical students. He is member of the Patient engagement committee of the French High Autority of health. Thomas Sannié is a former member of the WFH Board (2010-2014) and recepient in 2018 of the WFH International Prize Franck Schnabel. He is also member of WFH several committees.
Mark Skinner, Washington, DC, is President/CEO of the Institute for Policy Advancement Ltd, specializing in patient-centered outcomes research. He is an Assistant Professor in the Department of Health Research Methods, Evidence and Impact at McMaster. He has previously led both national and international patient organizations including the World Federation of Hemophilia and National Hemophilia Foundation where he currently serves on their Medical and Scientific Advisory Council. He is the principal investigator for the Patient Reported Outcomes Burdens and Experiences (PROBE) study, a global research project to enhance the direct patient voice in healthcare decision-making. He holds numerous roles as an advisor on critical blood safety and supply matters including having served on the US Health and Human Services Advisory Committee on Blood and Tissue Safety and Availability. He serves on the board of the Institute for Clinical and Economic Review (ICER), the National Organization for Rare Disorders (NORD) and formerly the Patient Centered Outcomes Research Institute (PCORI) Advisory Panel on Rare Disease, where he was an inaugural member. Previously, he was Vice President State Programs at the American Insurance Association and Administrative Assistant/Chief of Staff to the Speaker of the Kansas House of Representatives. He holds degrees in Public and Business Administration from Kansas State University and JD from Washburn University School of Law.
Alok Srivastava, MD, FRACP, FRCPA, FRCP Christian Medical College, Vellore, India Alok Srivastava is a Professor of Medicine in the Department of Haematology, and head of the Centre for Stem Cell Research, a unit of inStem, Bengaluru, at the Christian Medical College (CMC), Vellore in India. Dr. Srivastava has been involved with the management of patients with bleeding disorders for over 25 years. His group has worked extensively on developing management protcols for hemophilia and other inherited bleeding disorders including outcomes assessment which address the needs in developing countries. He promoted the concept of lower dose prophylaxis as an alternative to episodic factor replacement therapy. A major focus of his group's current research include assessment of novel therapies in different clinical trials as well as developing gene therapy for hemophilia using both AAV and lentiviral approaches, with the latter being evaluated in a first in human clinical trial. He leads the World Federation of Hemophilia designated International Hemophilia Training Center at CMC, Vellore. Dr. Srivastava is President of the Indian Association for Haemophilia & Allied Disorders. He is also the chair of the steering committee of the Association for Haemophilia & Allied Disorders – Asia-Pacific. He was the chair of the FVIII/IX subcommittee of the Scientific and Standardization Committee (SSC), International Society of Thrombosis and Haemostasis (ISTH) from 2006-2010. He was on the board of the WFH from 2002-2014 and served as the Vice-President (Medical) from 2012-2014. He has led the writing group for all three editions of the WFH guidelines for the management of hemophilia.
Sophie Susen is professor of Hematology at Lille medical school Lille (France) and heads the department of Hemostasis and Transfusion in Lille University Hospital. She has been a member of the expert-group for blood products at the French regulatory agency. Her basic research activity focuses mainly in the role of VWF and blood flow via different approaches. She is the national coordinator of the French National reference center on von Willebrand disease and the national network fore rare bleeding disorders. She heads the research team "Cardiac pathologies, blood flow abnormalities and Haemostasis" at Inserm.
Lisa Wilcox, PhD is the Global Medical Affairs lead for Hemophilia at Pfizer. In this role she leads the global medical affairs team and medical strategy for the Hemophilia portfolio, including approved and pipeline products. Lisa joined the pharmaceutical industry in 2004 with Wyeth Canada, transitioning to Pfizer in 2009. Since that time she has held multiple roles in Medical Affairs across therapeutic areas that span Oncology, Rare Diseases and Internal Medicine.
Krishnan Viswanadhan, Pharm.D. President & Chief Operating Officer Be Biopharma Krishnan Viswanadhan, Pharm.D., president and chief operating officer of Be Biopharma, is a biopharmaceutical executive with over 20 years of broad cross-functional experience in advancing new medicines for patients with serious and life-threatening diseases. Krishnan joined Be Bio as president and COO in 2021 and is responsible in driving all operational aspects of the business to unleash the power of engineered B cell medicines as therapeutics for patients with serious diseases. Prior to Be Bio, Krishnan was senior vice president, global cell therapy franchise lead at Bristol Myers Squibb (BMS) where he was responsible for overseeing the integrated cell therapy franchise strategy across the enterprise including building core capabilities including key investments to support long term growth. He oversaw the teams responsible for the development, approval and life cycle management of Breyanzi, a CD19 CAR-T, and Abecma, the first BCMA CAR T therapy. Prior to BMS, Krishnan was vice president, business development and global alliances, at Celgene Corporation, where he was responsible for managing the portfolio of partnerships and equity investments. Prior to Celgene, Krishnan had roles in large and small companies in regulatory strategy. Krishnan is a registered pharmacist and received his Pharm.D. from Rutgers University and holds an MBA degree from Cornell University. Krishnan currently serves the board as a non-executive director of JW Therapeutics, a leading cell therapy company in China, and as an independent director at Cargo Therapeutics.
Dr. Davide Matino is an Assistant Professor of Medicine at McMaster University in Hamilton, Ontario, Canada. Dr. Matino obtained his medical degree at the University of Perugia and completed his residency training at the University of Rome “Tor Vergata”. He completed his Clinical Fellowship in Bleeding disorders at McMaster University where he also received his MSc in Health Research Methodology. Prior to joining faculty at McMaster University in 2020 he was working at the University of Perugia as Assistant Professor in the Department of Experimental Medicine, leading a research project focused on the study of the immune response to FVIII in hemophilia, funded by the Italian Ministry of Health. He is actively engaged in the care of patients with bleeding and thrombotic disorders and contributes to education in the field of bleeding disorders locally, nationally and internationally. He is an active clinical trial investigator involved in numerous trials in the field of thrombosis and haemostasis with a specific focus on novel therapies for hemophilia. Dr Matino also directs a basic research lab investigating coagulation factor VIII and factor IX and the molecular mechanisms of hemophilia A and B. His work has received several awards and has been presented both nationally and internationally at the International Society for Thrombosis and Haemostasis, American Society of Hematology, and other scientific meetings.
Dr. Renchi Yang is Professor and Head of Thrombosis and Hemostasis Center at Institute of Haematology and Blood Diseases Hospital, Chinese Academy of Medical Sciences (CAMS) and Peking Union Medical College (PUMC). Dr. Yang contributes extensively to clinical research and is involved in many clinical trials. He has published over 100 peer-reviewed publications and book chapters on bleeding disorders. He is Steer Committee member of East Asia Hemophilia Forum and the Association for Hemophilia and Allied Disorders-Asia-Pacific (AHAD-AP). He is Vice Chairman of the Thrombosis and Hemostasis Society, China Medicine Education Association. He is also Standing Committee member of the Rare Diseases Society, Chinese Research Hospital Association. He is Chairman of Hemophilia Committee, China Alliance for Rare Diseases. He is Director of the National Hemophilia Registry Center, Chairman of the Hemophilia Treatment Center Collaborative Network of China, Chairman of National Hemophilia Cooperative Group. He is currently the translated edition (Chinese) editor of Haemophilia, the official journal of the World Federation of Hemophilia (WFH).
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Assistant Professor
Thrombosis and Atherosclerosis Research Institute (TaARI) – McMaster University
Hamilton, Canada
Head of Thrombosis and Hemostasis Centre
Institute of Hematology and Blood Diseases Hospital
Tianjin, China
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Industria | $1,000.00 |
Delegado | $765.00 |
Profesionales médicos (profesiones afines a la medicina) | $465.00 |
Agencia gubernamental | $250.00 |
Personal o voluntario de ONM | $250.00 |
Investigadores jóvenes/estudiantes | $250.00 |
PCTC o su familiar | $150.00 |
Cualquier solicitud de cambio o cancelación de la inscripción deberá enviarse por escrito a [email protected]. Se le enviará una confirmación del cambio o la cancelación. Todas las solicitudes estarán sujetas a las siguientes condiciones:
Para cualquier pregunta sobre la inscripción escriba a [email protected].
Interested in catching up on the discussions from GPAS 2021 and 2022? View recordings of select sessions on the WFH eLearning platform.
Ubicado en el corazón de la hermosa ciudad de Montreal, el hotel Fairmont Queen Elizabeth es un icónico edificio que ha recibido huéspedes durante más de seis décadas. Cuenta con varias opciones gastronómicas, instalaciones de vanguardia, gimnasio y spa.
La página de reservaciones de hotel estará disponible hasta el 13 de octubre de 2023. Después del 13 de octubre de 2023 las habitaciones estarán sujetas a disponibilidad y la tarifa no estará garantizada. Agradeceremos envíe un mensaje a [email protected] para verificar la disponibilidad después del 13 de octubre de 2023.
Tarifa por habitación por noche: $279 USD (impuestos y tasas incluidos)
¡Esperamos darle la bienvenida!
Cualquier cambio o cancelación de su reservación deberá enviarse por escrito a [email protected]. Se le enviará una confirmación del cambio o la cancelación. Todas las solicitudes estarán sujetas a las siguientes condiciones:
¿Se inscribe un grupo de 10 o más personas? Haga clic aquí para descargar el formulario de grupo. Envíe el formulario cumplimentado a [email protected] a más tardar el 1 de octubre de 2023.
Nos complace anunciar que Air Canada, Air France y KLM se han asociado con la FMH para ofrecer tarifas de vuelo con descuentos exclusivos de hasta el 15% para los asistentes al Foro Mundial de la FMH. Aproveche estas promociones aéreas y acompáñenos a ser parte de la conversación en el Foro Mundial.
Reservar su vuelo con descuento con Air Canada, Air France y KLM para asistir al Foro Mundial es fácil:
Para más información, póngase en contacto con [email protected].
Q | Who would benefit from attending GPAS? |
A |
|
Q | Will recordings be made available after the event? |
A | All sessions will be made available on demand after the event. |
Q | Will there be any live interpretation? |
A | The event will feature live interpretation in Spanish, French, Arabic and Russian. |
Q | When will I receive my login information to access the virtual event? |
A | Login information will be sent to all registered attendees on July 4, 2023 |
La Federación Mundial de Hemofilia (FMH) calcula que todavía no se ha identificado ni diagnosticado a más del 75% de las personas que se espera vivan con hemofilia en todo el mundo. Las tasas de identificación y diagnóstico son todavía menores en el caso de mujeres con trastornos de la coagulación, entre ellas mujeres con hemofilia, quienes históricamente han sido vistas solamente como portadoras. Sin un diagnóstico exacto, estas personas carecen de la oportunidad de tener acceso a atención y tratamiento adecuados. Por esta razón, la FMH ha encabezado diversas actividades a fin de incrementar la identificación de mujeres y niñas con trastornos de la coagulación (MNTC). El año pasado, la FMH obtuvo varios logros para este grupo vulnerable de la comunidad mundial de trastornos de la coagulación.
El Congreso Mundial 2024 de la FMH –que tendrá lugar en tan solo unas semanas, del 21 al 24 de abril– ha recibido acreditación del Consejo Europeo de Acreditación en Hematología (EBAH por su sigla en inglés), entidad acreditadora apoyada y respaldada por la Asociación Europea de Hematología (EHA por su sigla en inglés), para otorgar hasta 32 créditos de educación médica continua (EMC) y desarrollo profesional continuo (DPC).
La Federación Mundial de Hemofilia (FMH) tiene el gusto de anunciar que en octubre de 2023 se firmó un memorándum de entendimiento (MdE) trilateral para el establecimiento de una alianza en el marco del Programa de Acceso a Atención y Tratamiento (PACT por su sigla en inglés) entre la FMH, el Ministerio de Salud egipcio (MdS) y la Sociedad Egipcia de Hemofilia (SHE). El MdE lo ratificaron en El Cairo César Garrido, presidente de la FMH, el doctor Mohamed Al Sayed Dahy, presidente de la Organización de Seguros de Salud, en nombre del MdS, y el doctor Magdy El-Ekiaby, vicepresidente de la SHE. El MdE no es el principio de la colaboración de la FMH en Egipto; es, de hecho, un nuevo hito en una colaboración con más de dos décadas de duración.
© 2024 World Federation of Hemophilia
Registro caritativo: 108222050 RR 0001
Advocacy
Humanitarian Aid
Identification and diagnosis
Treatment and care
Research and data collection
Training
Education & eLearning
SEARCH
The information on the WFH website is provided for general information purposes only. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific medical problem, the WFH recommends that you contact your physician or local treatment centre. Before administering any products, the WFH urges patients to check dosages with a physician or hemophilia centre staff, and to consult the pharmaceutical company’s printed instructions.
While every effort has been made to ensure the accuracy of the information on this site, the WFH does not guarantee the information is accurate, and is not responsible in any way whatsoever for damages arising out of the use of this website or any of the information contained herein.
Messages posted to WFH discussion forums, Facebook, Twitter, and other social media platforms do not represent the opinions of the World Federation of Hemophilia, its staff, or Board of Directors. The author of a message is solely responsibility for its content. Information posted on WFH social networks and platforms should never be a substitute for individualized professional medical advice, even when the author has medical qualifications or is considered an authority. Information posted to a discussion group should not be used to diagnose or treat a specific health problem without consulting a qualified healthcare professional. The WFH recommends that you contact your physician or local treatment centre if you have any individual questions or concerns.
References and links to other websites or references to other organizations, products, services, or publications do not constitute endorsement or approval by the WFH. The WFH is not responsible and assumes no liability for the content of any linked websites.
The WFH has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH staff or falsely stating that they are associated with the WFH. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH, are fraudulent and come from outside of our organization.
If you receive a suspicious solicitation, exercise extreme caution. In the case of an email, look at the email address to see if it looks suspicious (for example, all WFH emails come from @wfh.org).
We are asking you to remain vigilant, and if you have any doubts about the correspondence, please forward the email to the WFH at [email protected] or call +1 514-875-7944.
Apoye nuestra labor
Encuentre apoyo local
Solicite becas y subvenciones
Solicite ayuda humanitaria
Actividades de cabildeo
Ayuda humanitaria
Identificación y diagnóstico
Tratamiento y atención
Investigación y recolección de datos
Capacitación
Instrucción y aprendizaje electrónico
BÚSQUEDA
Recognizing that training women leaders ensures the diversity our community need to thrive; the Hemophilia Alliance has been a longtime supporter of the Susan Skinner Memorial Fund. They deepened their engagement with the global community through the establishment of the Travel Grant Program, which allows US-based multidisciplinary healthcare professionals the opportunity to attend WFH global training workshops. The wealth of experience and perspective attendees bring back home to their communities helps patients across the country. Their patience and support as we grappled with changing norms in these challenging times gave us the flexibility to meet our community’s needs with revamped programming.
National Hemophilia Center, Tel Hashomer
Sheba Medical Center
Haemophilia Comprehensive Care Centre
Charlotte Maxeke Johannesburg Academic Hospital
Singapore General Hospital Haemophilia Treatment Clinic
Centre International de Traitement de l’Hémophilie (CITH) de Dakar
Centre National de Transfusion Sanguin (CNTS)
National Medical Research Center of Hematology of the Russian Academy of Medical Sciences
Van Creveldkliniek
University Medical Centre Utrecht
Nara Hemophilia Centre
Nara Medical University
Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre
Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico
National Institute of Immunohaematology (ICMR) and KEM Hospital
Christian Medical College, Vellore
Malmö Centre for Thrombosis and Haemostasis
Department for Hematology and Coagulation Disorders, Skåne University Hospital
Skåne University Hospital
Paris Haemophilia Centre (Necker (N) and Kremlin Bicetre (KB) Hospitals)
Shabrawishi Hospital, Egyptian Society of Hemophilia, and Cairo University
University of Toronto Hemophilia Centres
St. Michael’s Hospital
Hemocentro – “Unidade de Hemofilia Cláudio Luiz Pizzigatti Corrêa”
Hemocentro Unicamp, University of Campinas
Haemostasis and Thrombosis Unit
Division of Haematology
Cliniques universitaires Saint-Luc
Hemofiliecentrum Leuven, University of Leuven
Medical University of Vienna
Department of Medicine I
Clinical Division of Hematology and Hemostaseology
Ronald Sawers Haemophilia Centre
Instituto Asistencial “Dr. Alfredo Pavlovsky”
(Fundación de la Hemofilia)
Instituto De Investigaciones Hematológicas “Dr. Mariano R. Castex” (IIHEMA
(Academia Nacional de Medicina)
Hospital Universitario La Paz
Haemostasis and Thrombosis Unit
Haematology Service, University and Polytechnic Hospital
International Hemophilia Training Center – Bangkok
Ramathibodi Hospital
Mahidol University
Hemophilia of Georgia has stood with us for over three decades, playing an early role in distributing donated factor via the WFH Humanitarian Aid program. Our relationship has deepened over the years as they continued to support this program and came on board as a founding Chapter Challenge champion in 2016. Their belief in educating future leaders is clear in their investment in the Youth Leadership Workshops, which has led to the training of over 50 young adults. They also support workshops devoted to educating providers and patient leaders on how to collect and use data to advocate for better patient care. Their staff generously volunteer their time as trainers and as well as serving on various committees.
The National Bleeding Disorders Foundation helps advance our mission on several fronts. They inspire others to follow their lead as a founding champion of the NHF Chapter Challenge. Their commitment to equality of access is demonstrated in their support of the Cornerstone Initiative, which lays the foundation for care in the world's most underserved regions, as well as programs that aim to raise awareness and improve care of women with bleeding disorders and those with von Willebrand disease. We also benefit from their steadfast engagement with various programs including the WFH Twinning Program and their individual leaders’ contribution to our leadership and committees.
Do you sometimes wish you could do more? A bequest is a simple way for you to make a significant gift without changing anything about your financial security and lifestyle today. Your legacy will sustain care for the generations to come.
Download these sample clauses to give to your legal advisor.
We understand if you prefer to remain anonymous, but we would be very honoured if you would let us know of your intentions so that we may thank you personally. We would also be happy to answer any questions you may have or give you additional information. Please contact Jennifer Laliberté at 514‑875‑7944 ext.2822 or [email protected].
The information on the WFH USA website is provided for general information purposes only. The WFH USA does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific medical problem, the WFH USA recommends that you contact your physician or local treatment centre. Before administering any products, the WFH USA urges patients to check dosages with a physician or hemophilia centre staff, and to consult the pharmaceutical company’s printed instructions.
While every effort has been made to ensure the accuracy of the information on this site, the WFH USA does not guarantee the information is accurate, and is not responsible in any way whatsoever for damages arising out of the use of this website or any of the information contained herein.
Messages posted to WFH USA discussion forums, Facebook, Twitter, and other social media platforms do not represent the opinions of the World Federation of Hemophilia, its staff, or Board of Directors. The author of a message is solely responsibility for its content. Information posted on WFH USA social networks and platforms should never be a substitute for individualized professional medical advice, even when the author has medical qualifications or is considered an authority. Information posted to a discussion group should not be used to diagnose or treat a specific health problem without consulting a qualified healthcare professional. The WFH USA recommends that you contact your physician or local treatment centre if you have any individual questions or concerns.
References and links to other websites or references to other organizations, products, services, or publications do not constitute endorsement or approval by the WFH USA. The WFH USA is not responsible and assumes no liability for the content of any linked websites.
The WFH USA does not collect personally identifying information about you when you visit our site, unless you choose to provide such information to us. Providing such information is strictly voluntary. This policy is your guide to how we will handle information we learn about you from your visit to our website.
Throughout our website, we provide links to other servers which may contain information of interest to our readers. We take no responsibility for, and exercise no control over, the organizations, views, or accuracy of the information contained on other servers. When linking to the WFH USA, we request that you ensure that there are no associated connections for commercial purposes. Any official use of the name WFH USA or the use of its logo needs to be approved by the WFH USA. If you have a link you’d like us to consider adding to our website, please send an email to [email protected] with the subject “Link request.”
All information, photographs, graphics, and other material on this website are protected by copyright. While users of this website may use the content for personal, non-commercial use, none of the content of this website can be modified, translated, transferred or sold, copied, reproduced, published, or distributed, in whole or in part, without the prior written consent of the WFH USA. To view a copy of the WFH USA’s permissions guidelines, click here.
The WFH USA encourages the dissemination of its information and welcomes proposals on the reprinting, redistribution, and translation of its materials. If you would like to publish information that you find on our website, please send your request to [email protected].
If you have suggestions on how to make the site more accessible, please contact us at [email protected].
Our website provides users the opportunity to opt-out of receiving communications from us through a special online form or via the communication they have received. You may, at all times, choose to receive which communications within the organization you can receive or none at all. You may also update your contact information previously provided to us via another online form.
If you have any questions about this privacy statement, the practices of this site, or your dealings with this website, you can contact us at [email protected].
The WFH USA has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH USA staff or falsely stating that they are associated with the WFH USA. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH USA, are fraudulent and come from outside of our organization.
If you receive a suspicious solicitation, exercise extreme caution. In the case of an email, look at the email address to see if it looks suspicious (for example, all WFH USA emails come from @wfhusa.org or @wfh.org).
We are asking you to remain vigilant, and if you have any doubts about the correspondence, please forward the email to the WFH USA at [email protected] or call 1-877-417-7944.
2012 | Christine Lee United Kingdom |
2006 | Dr. Bruce Evatt United States |
2012 | Piet de Kleijn Países Bajos |
2010 | Dr. Mammen Chandy India |
2008 | Dr. Man-Chiu Poon Canadá |
2006 | Dr. Norma de Bosch Venezuela |
2004 | Dr. Parttraporn Insarangkura Tailandia Dr. Carol K. Kasper Estados Unidos |
Katharine Dormandy Haemophilia Centre and Thrombosis Unit
Royal Free Hospital
Manchester Haemophilia Comprehensive Care Centre (Children’s and Adult’s)
Manchester Royal Infirmary and Manchester Children’s Hospital
Oxford Haemophilia Centre and Thrombosis Centre
Churchill Hospital
Sheffield Haemophilia and Thrombosis Centre
Royal Hallamshire Hospital
2020 | Aluva (India) – Newcastle (Reino Unido) |
2019 | Yogyakarta / Solo (Indonesia) – Utrecht (Países Bajos) |
2018 | Abidjan (Costa de Marfil) – Bruselas (Bélgica) |
2017 | Santa Cruz de la Sierra (Bolivia) – Buenos Aires (Argentina) |
2016 | Kampala (Uganda) – Londres (Reino Unido) |
2015 | Varna (Bulgaria) – Bonn (Alemania) |
2014 | Arequipa (Perú) – Los Ángeles (Estados Unidos) |
2013 | Davangere (India) – Liverpool (Reino Unido) Ludhiana (India) – Detroit (Estados Unidos) |
2012 | Hanói (Vietnam) – Melbourne (Australia) |
2011 | Manado (Indonesia) – Utrecht (Países Bajos) |
2010 | Delhi (India) – Winnipeg (Canadá) Yaoundé (Camerún) – Ginebra (Suiza) |
2009 | Chisinau (Moldovia) – Varsovia (Polonia) Colombo (Sri Lanka) – Vellore (India) |
2008 | Gaborone (Botswana) – Filadelfia (Estados Unidos) |
2007 | Vientiane (Laos) – Brest (Francia) Damasco (Siria) – Montpellier (Francia) |
2006 | Lima (Perú) – Fort Worth (Estados Unidos) |
2005 | Ereván (Armenia) – Minneapolis (Estados Unidos) Casablanca (Marruecos) – Caen (Francia) |
2004 | Beirut (Líbano) – Ginebra (Suiza) Santo Domingo (República Dominicana) – Caracas (Venezuela) |
2003 | El Cairo (Egipto) – Knoxville (Estados Unidos) |
2002 | Moscú (Rusia) – Liverpool (Reino Unido) Panamá – Valencia (España) |
2001 | Bangalore (India) – St. Louis (Estados Unidos) |
2000 | Pune (India) – Bradford (Reino Unido) |
1999 | Montevideo (Uruguay) – Buenos Aires (Argentina) Tianjin (China) – Calgary (Canadá) |
1998 | Plovdiv (Bulgaria) – Bonn (Alemania) |
1997 | Bogotá (Colombia) – Los Ángeles (Estados Unidos) Tartu (Estonia) – Estocolmo (Suecia) |
1996 | Timisoara (Rumanía) – Múnich (Alemania) Riga (Letonia) – Munster (Alemania) |
1995 | Klaipeda (Lituania) – Malmo (Suecia) |
1994 | Bratislava (Eslovaquia) – Tel Hashomer (Israel) |
2020 | NHF (Estados Unidos) – HFI (India) |
2019 | Madagascar – Bretaña (Francia) |
2018 | Kenia – Escocia |
2017 | Mongolia – Manitoba (Canadá) |
2016 | Tanzania – Ontario (Canadá) |
2015 | Bangladesh – Canadá |
2014 | Nicaragua – Quebec (Canadá) |
2013 | Islas Mauricio – Sudáfrica |
2012 | Vietnam – Irlanda |
2011 | Camboya – Nueva Zelanda |
2010 | Túnez – Quebec (Canadá) |
2009 | Perú – Galicia (España) |
2008 | Sudáfrica – Canadá |
2007 | Honduras – Georgia (Estados Unidos) |
2006 | Bosnia y Herzegovina – Irlanda |
2005 | Pakistán – Malasia |
2004 | República Dominicana – Venezuela |
2003 | Jordania – Toronto (Canadá) |
2002 | Nicaragua – Venezuela |
2001 | Filipinas – Victoria (Australia) |
2000 | Georgia – Minnesota (Estados Unidos) Uruguay – Argentina |
1999 | Nepal – Suecia México - Texas (Estados Unidos) |
1998 | Letonia – Alemania |
1997 | India – Dinamarca |
1995 | Israel – Eslovaquia |
2021 | Axel Seuser Alemania |
2019 | Dr. Adolfo Llinás Colombia |
2017 | Pamela Hilliard Canadá |
2015 | Kathy Mulder Canadá |
2013 | James Luck Estados Unidos |
2012 | Piet de Kleijn Países Bajos |
2011 | Dr. Lily Heijnen Países Bajos |
2010 | Dr. Horacio Caviglia Argentina |
2009 | Jerome D. Wiedel Estados Unidos |
2008 | Dr. Federico Fernández-Palazzi Venezuela |
2007 | Michael Heim Israel |
2006 | Brenda Buzzard Reino Unido |
2005 | Dr. Marvin Gilbert Estados Unidos |
2021 | Baolai Hua Yangzhou College, Xuzhou Medical University |
The effects of intra-articular injection of TNF-alpha Antagonists in treatment of haemophilic synovitis |
2019 | Maarten Eerdekens Bélgica |
Asociación entre la cinética multisegmento del pie y el daño articular inducido por la sangre en pacientes adultos con artropatía hemofílica del tobillo |
2017 | Fabio Souza Brasil |
Decrease in joint inflammation, swelling and pain after a swimming protocol in animal model of experimental-induced hemarthrosis |
2015 | SM Javd Mortazavi Irán |
Bilateral total knee arthroplasty in patients with hemophilia: A safe and cost-effective procedure |
2013 | Lize F.D. van Vulpen Estados Unidos |
Una proteína de fusión de IL4 e IL10 es igualmente eficaz para proteger el cartílago del daño inducido por la sangre en comparación con los componentes |
2012 | Horacio Caviglia Argentina |
Cirugía de pseudotumor en pacientes con hemofilia A: resultados comparativos entre pacientes inhibidores y no inhibidores |
2011 | Nick Goddard Reino Unido y Monique van Meegeren Países Bajos |
La administración temprana de IL-4 e IL-10 previene el daño del cartílago inducido por la sangre in vitro |
2010 | Lydia Abad-Franch España |
Influencia de un protocolo de entrenamiento acuático en la reducción del riesgo de morbilidad y mortalidad cardiovascular en un hemofílico |
2009 | Sebastien Lobet Bélgica |
Impacto de la artropatía del tobillo con hemofilia en la discapacidad de la marcha: análisis de variables energéticas y mecánicas |
2008 | Jose Alberto Tlacuilo-Parra México |
Marcadores de rotación ósea y densidad mineral ósea en niños con hemofilia |
2007 | Natalie Jansen Países Bajos |
Capacidades protectoras de la interleucina-10 en el daño del cartílago inducido por la sangre |
2006 | Axel Seuser y E. Kusch Alemania |
Estudio multicéntrico del resultado ortopédico de las extremidades inferiores en 249 niños con hemofilia |
2005 | Frank van Genderen, Nico van Meeteren, Lily Heijnen, Piet de Kleijn, Marijke van den Berg, Paul Helders Países Bajos |
Lista de actividades para la hemofilia: desarrollo final y validación de un cuestionario de autoevaluación específico para hemofilia sobre las capacidades funcionales |
2004 | Goris Roosendaal, Zalima N Jahangier, Kim MG Jacobs, Johannes WJ Bijlsma, Floris PJG Lafeber Países Bajos |
La radiosinoviortesis con YTTRIUM-90 da como resultado efectos directos adversos sobre el cartílago: un estudio in vitro en humanos |
2003 | Axel Seuser, Thomas Wallny, Günter Schumpe, Elmar Trunz, Hans-Hermann Brackman Alemania |
¿Cómo aconsejar a los jóvenes hemofílicos que encuentren el deporte adecuado? Un algoritmo nuevo y seguro |
2002 | James Luck, Jr. y Mauricio Silva Estados Unidos |
Revisión a largo plazo de la artroplastia total de rodilla |
2001 | Federico Fernández-Palazzi Venezuela |
Clorhidrato de oxitetraciclina: un nuevo material para las órtesis sinoviales químicas |
2000 | Horacio Caviglia Argentina |
Pseudotumores |
1999 | William J. Ribbans y J.L. Hicks Reino Unido |
Comunicación y cooperación para el nuevo milenio: el futuro del comité musculoesquelético en el siglo XXI |
1998 | Adolfo Llinas, Mauricio Silva, Monica Duarte, Gonzalo Ucros, Graciela Perini, Angela Maria Cerquera, Andres Forero Colombia |
La sinoviortesis de fosfato crómico sin restricción de edad debería ser la primera opción de tratamiento para la sinovitis hemofílica activa crónica |
2012 | Martha Patricia Monteros Rincon México |
2010 | Antonia Luque de Garrido Venezuela |
2008 | Jean Michel Bouchez Francia |
2006 | Yuri Zhulyov Rusia |
2004 | Ashok Verma India |
Los resultados de interés recolectados en el RMTC abarcan características demográficas, resultados médicos y relacionados con el tratamiento, resultados de la carga de la enfermedad, y calidad de vida. La escala de calidad de vida, EQ-5D-5L, forma parte del conjunto de datos ampliados del RMTC. Está disponible en más de 130 idiomas y en diferentes formatos de administración.
Si desea un idioma diferente envíe un mensaje de correo electrónico a [email protected].
amhárico
árabe (Argelia, Marruecos, EAU)
inglés (Ghana, India, Jamaica, Kenia, Nigeria, Filipinas)
francés (Argelia, Bélica, Marruecos)
húngaro
malayo
nepalí
punjabi
ruso (Ucrania)
serbio
español (Panamá, España, Estados Unidos)
swahili
tagalo
tailandés
twi
ucraniano
urdu
vietnamita
Si desea más información visite https://euroqol.org/eq-5d-instruments/eq-5d-5l-about/.
Los resultados de interés recolectados en el RMTC abarcan características demográficas, resultados médicos y relacionados con el tratamiento, resultados de la carga de la enfermedad, y resultados reportados por los pacientes.
El RMTC incluye cinco escalas funcionales (en inglés) como parte de su conjunto de datos ampliados:
El conjunto de datos mínimo (CDM) es un grupo de datos demográficos, sobre diagnóstico, síntomas y tratamiento que se recolecta de los pacientes que participan en el RMTC.
El conjunto de datos ampliado (CDA)es un grupo de datos más grande, con mayores detalles que el CDM, que abarca preguntas sobre datos demográficos, diagnóstico, síntomas, tratamiento y carga de la enfermedad de los pacientes. Los centros de tratamiento de hemofilia pueden utilizar el CDA para recolectar información de pacientes que participan en el RMTC. El conjunto de datos ampliado (CDA) del RMTC se agregó a la base de datos en marzo del 2019.
University of North Carolina Hemophilia & Thrombosis Center
Nationwide Children’s Hospital
Gulf States Hemophilia and Thrombophilia Center
University of Texas Health Science Center at Houston
Orthopaedic Hemophilia Treatment Center
Mount Sinai School of Medicine
Mount Sinai Medical Center
Mayo (Rochester) Comprehensive Hemophilia Center, and International Hemophilia Training Center (WFH)
Mayo Clinic/Foundation and Mayo Medical School
Hemophilia & Thrombosis Treatment Center
University of California San Diego
Frank Schnabel, un hombre de negocios canadiense con hemofilia A grave, fundó la FMH en 1963. Schnabel estaba convencido de que las organizaciones de pacientes podían ser mucho más eficaces, y hacer más para representar los intereses de las personas con trastornos de la coagulación, si trabajaban unidas. El primer Congreso de la FMH se realizó en Copenhague, Dinamarca, el 25 de junio de 1963, y en él participaron representantes de 12 países. Actualmente, la FMH y su red mundial de organizaciones nacionales miembros (ONM) representan los intereses de personas con hemofilia y otros trastornos de la coagulación hereditarios en 147 naciones.
Networking dinner reception
Mingle, connect, and build valuable connections at our exclusive networking dinner reception while savouring some of Montreal’s renowned culinary delights!
Energizing morning powerwalk
Join us for a dynamic early morning power walk to kick off day two of the WFH Global Forum. Kick-start your morning and demonstrate your commitment and support for the global bleeding disorders community.