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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:
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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
La tercera edición de la Cumbre mundial de la FMH sobre políticas y acceso a tratamiento (GPAS por su sigla en inglés) tendrá lugar del 6 al 7 de julio de. Únase a sus colegas para:
Las presentaciones y charlas durante la cumbre virtual de dos días de duración se centrarán en torno a incrementar el acceso al diagnóstico, la atención y el tratamiento para personas que viven con trastornos de la coagulación. La conferencia contará con ponentes y participantes de organizaciones aliadas locales e internacionales, representantes de gobiernos nacionales, profesionales de la salud, líderes de ONM de la FMH, y defensores de la comunidad de trastornos de la coagulación.
La Cumbre mundial de la FMH sobre políticas y acceso a tratamiento (GPAS por su sigla en inglés) constituye una oportunidad única a fin de documentar, debatir e intercambiar conocimientos sobre estrategias para incrementar el acceso equitativo a la atención y el tratamiento para la comunidad mundial de trastornos de la coagulación. ¡Esperamos conectarnos con ustedes virtualmente en julio próximo!
Join us online at #MSKCongress
Cumbre mundial de la FMH sobre políticas y acceso a tratamiento
Este evento virtual de dos días de duración ofrecerá sesiones plenarias y educativas, sesiones relámpago con casos de cabildeo, y conversaciones entre partes interesadas clave*, todas centradas en temas relacionados con el impulso a la atención y el acceso al tratamiento alrededor del mundo.
El horario de todas las sesiones es el Horario de Verano del Este (EDT).
*Las conversaciones entre partes interesadas clave son exclusivamente por invitación.
Acompáñenos durante la plenaria de apertura a escuchar sobre los objetivos de la Cumbre GPAS y sus aspectos destacados. Conozca más acerca de la labor de la FMH a fin de mejorar el acceso equitativo al diagnóstico, el tratamiento y la atención de personas con trastornos de la coagulación, independientemente del tipo de su trastorno, de su género o del lugar donde vivan. jueves, 6 de julio
Presidenta
Salome Mekhuzla, Director – Global Development, World Federation of Hemophilia, Montreal, Canada
Palabras de apertura – Hacia un acceso equitativo para todos
Cesar Garrido, President, World Federation of Hemophilia, Caracas, Venezuela
Discurso de apertura
Clive Ondari, Director of Health Products Policy and Standards, World Health Organization, Geneva, Switzerland
El acceso al diagnóstico y la atención varia considerablemente de un país a otro, y de una región a otra. Acompañe a nuestros expertos conforme abordan las disparidades mundiales en la identificación y el diagnóstico, el acceso a terapias, el acceso a tratamiento profiláctico, y otros temas, con un enfoque particular en las barreras que enfrentan las personas con hemofilia y con enfermedad de Von Willebrand, y mujeres y niñas con trastornos de la coagulación.
Presidenta
Rana Saifi, Regional Manager, Eastern Mediterranean, World Federation of Hemophilia, Montreal, Canada
Disparidades mundiales en el acceso al diagnóstico y la atención para PCTC
Alain Baumann, CEO, World Federation of Hemophilia, Montreal, Canada
Barreras para el acceso al diagnóstico y la atención de personas con EVW
Nathan Connell, Chief of Medicine, Brigham and Women’s Faulkner Hospital, Boston, United States
Barreras para el acceso al diagnóstico y la atención de mujeres y niñas con trastornos de la coagulación
Dawn Rotellini, Chief Operating Officer, National Hemophilia Foundation, Gibsonia, United States
Nuestras organizaciones nacionales miembros (ONM) en todo el mundo se encuentran a la vanguardia de las actividades de cabildeo en favor de las personas con trastornos de la coagulación. Acompáñenos durante esta sesión y escuche de nuestras ONM sobre algunos de los principales proyectos de cabildeo que realizan en sus países con el objeto de afrontar las barreras para el diagnóstico y la atención. Motívese a medida que nuestros presentadores comparten sus experiencias, lecciones aprendidas, y recomendaciones que usted puede implementarse de inmediato.
Presidente
Juan Andrés Pereira de Souza, President, Asociación De Hemofilia Del Uruguay, Montevideo, Uruguay
Abogar por el establecimiento de una red de profilaxis
Latifa Lamhene, Association Nationale des Hémophiles, Algeria
La ruta hacia la profilaxis en Egipto
Mohammed Soliman, Egyptian Society of Hemophilia, Egypt
Reducir la brecha en el diagnóstico, el tratamiento y la atención entre mujeres/niñas y hombres/niños con trastornos de la coagulación
Yannick Collé, Association Nationale des Hémophiles, France
Inclusión de pacientes con hemofilia y otros trastornos de la coagulación en el Consejo Nacional de Personas con transtornos en la coagulación (NCPWD por sus siglas en inglés)
James Kago, Kenya Haemophilia Association, Kenya
Sudán: Preservar el acceso a la atención y tratamiento para pacientes con trastornos de la coagulación durante el conflicto en abril-mayo 2023
Nawal Eltayeb MD, Sudanese Hemophilia Society, Sudan
Abogar por un enfoque en mujeres con trastornos de la coagulación en el sistema de atención de la salud de Siria
Tahani Ali MD, Syrian Hemophilia Society, Syria
Coalición Todos los Copagos Cuentan
Bill Robie, National Hemophilia Foundation, United States
La FMH calcula que más del 70% de las personas que se espera vivan con hemofilia en el mundo todavía no han sido identificadas ni diagnosticadas. Acompáñenos durante esta sesión para descubrir los hallazgos clave de la encuesta entre ONM de la FMH sobre barreras para la identificación y el diagnóstico. Conozca estrategias para fortalecer los sistemas de salud mediante el análisis del papel de la atención médica primaria, de programas nacionales de identificación, y de las recomendaciones de las guías de la FMH para el tratamiento de la hemofilia y de la EVW. Participe en la conversación en la que nuestro panel de expertos destacará proyectos de identificación exitosos que han acelerado la identificación y el diagnóstico de PCTC.
Presidenta
Emna Gouider, Chief, Aziza Othmana Hospital- University Tunis El Mana, Tunis, Tunisia
Presentación de la encuesta de las ONM de la FMH sobre barreras para la identificación y el diagnóstico
Juliana Hagembe, Outreach & Diagnosis Consultant, World Federation of Hemophilia, Nairobi, Kenya
Fortalecimiento de los sistemas de salud a fin de incrementar la identificación y el diagnóstico de PCTC
Adriana Velasquez Berumen, Team Lead Medical Devices and In Vitro Diagnostics, MDD, World Health Organization, Geneva, Switzerland
Panel de discusión sobre estrategias para acelerar la identificación y el diagnóstico de PCTC
Megan Adediran, Executive Director, Haemophilia Foundation of Nigeria, Kaduna, Nigeria
Mina (Kate) Hill, Haemophilia Nurse Co-Ordinator, South African Haemophilia Foundation, Cape Town, South Africa
Tahani Ali, Professor, Hematology & blood transfusion, Faculty of medicine, Damascus University, Damascus, Syria
* Exclusivamente por invitación
* Exclusivamente por invitación
¿Cómo garantizar que las organizaciones de pacientes tengan un lugar en la mesa en la que se toman las decisiones? Acompañe a nuestro experto principal y descubra estrategias concretas para exitosas actividades de cabildeo orientadas a obtener una inversión gubernamental sustentable en la atención de los trastornos de la coagulación. Aprenda acerca del enfoque multifacético para fortalecer sistemas de administración de la atención mediante el análisis de las guías de la FMH para la organización de la atención y recomendaciones sobre administración eficaz de la atención, programas y comités nacionales para la atención de trastornos de la coagulación, y el papel esencial de las ONM a fin de impulsar el proceso. Conozca un cautivador caso de estudio de Brasil que abordará la perspectiva gubernamental sobre el desarrollo de programas nacionales para trastornos de la coagulación.
Presidente
Ekawat Suwantaroj, Vice President, Thai Hemophilia Patient Club – National Hemophilia Foundation of Thailand, Bangkok, Thailand
Estrategias para incrementar la inversión gubernamental en el tratamiento de trastornos de la coagulación
Dawn Rotellini, Chief Operating Officer, National Hemophilia Foundation, Gibsonia, United States
Fortalecimiento de los sistemas de administración de la atención
Alok Srivastava, Professor, Christian Medical College, Vellore, India
Perspectiva gubernamental sobre programas nacionales para trastornos de la coagulación y/o el caso de un país para incluir a los trastornos de la coagulación en las políticas de salud
Erich Vinicius de Paula, Ministry of Health, Brazil
El acceso a las terapias actuales varia considerablemente alrededor del mundo. Esta sesión arrancará con un panorama general de las terapias disponibles actualmente y las que se encuentran en desarrollo. Enseguida, un panel de discusión entre expertos abordará los desafíos para incrementar el acceso equitativo ante un panorama de tratamiento en rápida evolución. Participe en la conversación para aprender más sobre los avances en terapias novedosas y qué estrategias deberán implementarse a fin de incrementar el acceso equitativo a las terapias existentes y novedosas.
Presidente
Dawn Rotellini, Chief Operating Officer, National Hemophilia Foundation, Gibsonia, United States
Panorama general de terapias existentes y novedosas para trastornos de la coagulación
Len Valentino, CEO, National Hemophilia Foundation, New York, United States
Panel de discusión sobre el incremento al acceso equitativo en una era de tratamiento en rápida evolucióne
Brian O’Mahony, CEO, Irish Haemophilia Society, Dublin, Ireland
Len Valentino, CEO, National Hemophilia Foundation, New York, United States
Cedric Hermans, Head, Hemophilia Center, Cliniques Universitaires Saint-Luc, Woluwe-Saint-Lambert, Belgium
David Page, Director of Health Policy, Canadian Hemophilia Society, Montreal, Canada
Lanzado en 2021, el Programa de la FMH de acceso a atención y tratamiento (PACT por su sigla en inglés) fue creado para mejorar la identificación y el diagnóstico de PCTC, así como su acceso a una atención sustentable.
¿Cuáles han sido sus avances a dos años de su implementación? Descubra los logros alcanzados desde el 2021 con miras al cumplimiento de las metas del programa PACT. Obtenga más información sobre el curso de ocho meses de la Academia de cabildeo del PACT, y escuche historias de la vida real de ONM participantes en el PACT, en las que comparten sus resultados y el impacto que su participación en el Programa ha tenido en la comunidad de trastornos de la coagulación de sus respectivos países.
Presidente
Salome Mekhuzla, Director – Global Development, World Federation of Hemophilia, Montreal, Canada
Objetivos del Programa PACT y avances a dos años de su implementación
Guada Lagrada, Head – Regional Development, World Federation of Hemophilia, Montreal, Canada
Academia de cabildeo del PACT
Julia Chadwick, Education Materials Coordinator , World Federation of Hemophilia, Montreal, Canada
Panel de discusión: Historias sobre el impacto del PACT en países participantes en el Programa
Juan Andrés Pereira de Souza, President, Asociación De Hemofilia Del Uruguay, Montevideo, Uruguay
Flerida Hernandez, Physician, Hemophilia Association of the Philippines for Love and Service Inc., Manila, Philippines
Premroop Alva, President, Hemophilia Federation (India), New Delhi, India
Abdoulaye Loum, President, Association Sénégalaise des Hémophiles (ASH), Dakar, Senegal
Obtenga más información sobre el modelo de decisiones compartidas y su valor para permitir que personas con hemofilia (PCH) puedan tomar decisiones de tratamiento documentadas junto con su equipo de atención de la salud. Descubra ejemplos concretos de su aplicación exitosa para otros tipos de enfermedades. Sea testigo del debut a escala mundial de la nueva Herramienta de la FMH para tomar decisiones compartidas en el tratamiento de la hemofilia. Entérese de cómo aplicar el modelo de decisiones compartidas al ejercicio de la medicina.
Presidente
Courtney Thornburg, Medical Director, Hemophilia and Thrombosis Treatment Center at Rady Children’s Hospital, San Diego, United States
Presentación sobre el modelo de decisiones compartidas en la atención de la salud y su valor
Mark Skinner, President and CEO, Institute for Policy Advancement Ltd, Washington, United States
Herramienta de la FMH para tomar decisiones compartidas
Donna Coffin, Director, Research & Education, World Federation of Hemophilia, Montreal, Canada
Aplicación del modelo de decisiones compartidas al ejercicio de la medicina
Victor Jiménez-Yuste, Head of department, Hospital La Paz, Madrid, Spain
Aplicación del modelo de decisiones compartidas como paciente
Bradley Rayner, Head of Programmes, South African Haemophilia Foundation, Cape Town, South Africa
Salome Mekhuzla, Director – Global Development, World Federation of Hemophilia, Montreal, Canada
Alain Baumann, CEO, World Federation of Hemophilia, Montreal, Canada
La tercera edición de la Cumbre mundial de la FMH sobre políticas y acceso a tratamiento (GPAS por su sigla en inglés) recibe apoyo financiero de Hemophilia Alliance y de sus centros de tratamiento de hemofilia (CTH) miembros, en todo Estados Unidos.
SILVER SPONSORS
Conozca a los miembros del Grupo mundial de la FMH sobre políticas públicas y cabildeo, quienes supervisan la preparación del programa de la GPAS 2023:
Team Lead Medical Devices and In Vitro Diagnostics, MDD,
World Health Organization,
Geneva, Switzerland
Director, State Government Relations
National Hemophilia Foundation
United States
Director of Health Products Policy and Standards,
World Health Organization,
Geneva, Switzerland
Medical Director
Hemophilia and Thrombosis Treatment Center at Rady Children’s Hospital-San Diego
United States
David Page
Director of Health Policy
The Canadian Hemophilia Society (CHS)
Chief Operating Officer
National Bleeding Disorders Foundation
Gibsonia, United States
Vice President of the Thai Hemophilia Patient Club
Thai Hemophilia Society
Bangkok, Thailand
Jefa del Departamento de Hematología Biológica
Hospital Aziza Othmana – Universidad Tunis El Mana
Túnez, Túnez
Medical Consultant of the National Program for Hereditary Bleeding Disorders
Ministry of Health in Brazil
Brazil
Physician
Hemophilia Philippines (HAPLOS Community) Foundation, Inc.
Manila, Philippines
Head, Regional Development
World Federation of Hemophilia
Montreal, QC
President
Asociación De Hemofilia Del Uruguay
Montevideo, Uruguay
Outreach & Diagnosis Consultant,
World Federation of Hemophilia,
Nairobi, Kenya
Miembro lego del consejo directivo
Federación Mundial de Hemofilia
Zagreb, Croacia
Haemophilia Nurse Co-Ordinator
South African Haemophilia Foundation
South Africa
Assistant Professor of Medicine
Brigham and Women’s Faulkner Hospital
Boston, United States
Gerente regional, Mediterráneo del Este
Federación Mundial de Hemofilia
Montreal, Canadá
Directora de Desarrollo mundial
Federación Mundial de Hemofilia
Montreal, Canadá
Professor, M.D.
Hematology & blood transfusion, Faculty of medicine, Damascus University
Syria
¡Inscríbase ahora a este evento gratuito exclusivamente virtual! La inscripción garantiza su acceso a todas las sesiones del 6 y el 7 de julio, excepto a las conversaciones con partes interesadas clave, las cuales son exclusivamente por invitación.
Para obtener más información sobre la inscripción escriba a [email protected].
La FMH puede ofrecer eventos como la GPAS de manera gratuita gracias al apoyo recibido de nuestros generosos donantes. Al hacer un donativo a la FMH estará apoyando iniciativas de cabildeo nacionales y mundiales, a fin de dar voz a todas las personas con trastornos de la coagulación. Su apoyo es vital—agradeceremos considere hacer un donativo hoy en give.wfh.org
¿Le interesa ponerse al día sobre las sesiones de las GPAS 2021 y 2022? Vea las grabaciones de sesiones selectas en la Plataforma de aprendizaje electrónico de la FMH.
P | ¿Quién se beneficiará participando en la GPAS? |
R |
|
R | ¿Habrá grabaciones disponibles después del evento? |
P | Todas las sesiones estarán disponibles bajo demanda durante 60 días, hasta el 31 de agosto de 2023. Puede acceder a ellas en esta misma plataforma de eventos. Las grabaciones de las sesiones en inglés aparecerán en 24 horas. El resto de idiomas estarán disponibles pocas semanas después de que finalice el evento. |
Q | ¿Habrá interpretación en vivo? |
A | El evento contará con interpretación en vivo en español, francés, árabe y ruso. |
Q | ¿Cuándo recibiré la información para iniciar sesión a fin de tener acceso al evento virtual? |
A | La información para iniciar sesión se enviará a todos los participantes inscritos el 4 de julio de 2023. |
La Federación Mundial de Hemofilia (FMH) tiene el gusto de anunciar que la segunda edición de la Cumbre mundial de la FMH sobre políticas y acceso a tratamiento (GPAS por su sigla en inglés) tendrá lugar los días 27 y 28 de octubre de 2022. Este evento gratuito, de dos días de duración, cubrirá estrategias para preservar y mejorar la atención de los trastornos de la coagulación en un mundo pandémico en rápida evolución, y ayudará a fomentar el diálogo y el intercambio de conocimientos entre organizaciones nacionales miembros (ONM) de la FMH, proveedores de atención médica, y gobiernos nacionales.
El 7 de mayo de 2022, durante la reunión anual de la Asamblea General de la Federación Mundial de Hemofilia (FMH), la asociación Safe Motherhood and Hemophilia Foundation The Gambia (SMHF por su sigla en inglés) fue bienvenida como organización nacional miembro (ONM) asociada de la FMH. La SMHF es ahora parte de una familia de 147 ONM de todo el mundo.
El Congreso Mundial 2022 de la FMH fue un éxito rotundo, con miles de asistentes de 145 países, quienes participaron tanto en persona, en Montreal, como de manera virtual. La FMH ahora tiene el gusto de ofrecerle acceso gratuito al contenido A pedido del evento.
© 2024 World Federation of Hemophilia
Registro caritativo: 108222050 RR 0001
Advocacy
Humanitarian Aid
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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 Institute of Immunohaematology (ICMR) and KEM Hospital
Christian Medical College, Vellore
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 Hemophilia Center, Tel Hashomer
Sheba Medical Center
Paris Haemophilia Centre (Necker (N) and Kremlin Bicêtre (KB) Hospitals)
Haemophilia Comprehensive Care Centre
Charlotte Maxeke Johannesburg Academic Hospital
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
Medical University of Vienna
Department of Medicine I
Clinical Division of Hematology and Hemostaseology
Ronald Sawers Haemophilia Treatment Centre
Instituto Asistencial “Dr. Alfredo Pavlovsky”
(Fundación de la Hemofilia)
Instituto De Investigaciones Hematológicas “Dr. Mariano R. Castex” (IIHEMA
(Academia Nacional de Medicina)
Singapore General Hospital Haemophilia Treatment Clinic
Hospital Universitario La Paz
Haemostasis and Thrombosis Unit
Haematology Service, University and Polytechnic Hospital
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.
2022 | Ammán (Jordania) – Dublín (Irlanda) |
2021 | Addis Abeba (Etiopía) – Minneapolis (EE.UU.) y Teherán (Irán) – Milán (Italia) |
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) |
2022 | Serbia – Manitoba (Canadá) |
2021 | Palestina – Venezuela |
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 |
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 | 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 |
2023 | Nicholas Goddard Reino Unido |
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 |
Malmö Centre for Thrombosis and Haemostasis
Department for Hematology and Coagulation Disorders, Skåne University Hospital
Skåne University Hospital
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 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.
Nationwide Children’s Hospital
Gulf States Hemophilia and Thrombophilia Center
University of Texas Health Science Center at Houston
Lifespan Orthopaedic Hemophilia Treatment Center at Luskin Orthopedic Institute for Children
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
Katharine Dormandy Haemophilia Centre and Thrombosis Unit
Royal Free Hospital
Oxford Haemophilia and Thrombosis Centre
Churchill Hospital
Sheffield Haemophilia and Thrombosis Centre
Royal Hallamshire Hospital
International Hemophilia Training Center – Bangkok
Ramathibodi Hospital
Mahidol University
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 152 naciones.