Inicio »

Aliados » Noticias de nuestros aliados corporativos

INTRODUCTION

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

2. SCOPE

3. DEFINITION OF "PERSONAL INFORMATION"

4. RESPONSIBILITIES OF WFH

5. HOW DO WE COLLECT YOUR CONSENT?

6. WHY WE COLLECT PERSONAL INFORMATION

7. WHAT PERSONAL INFORMATION DO WE COLLECT?

8. USE OF COOKIES

9. RESPONSE TO JOB OFFERS

10. PROTECTION OF THE PRIVACY OF MINORS

11. DO WE DISCLOSE YOUR PERSONAL INFORMATION TO THIRD PARTIES?

12. SHARING PERSONAL INFORMATION OUTSIDE QUÉBEC

13. HOW DO WE PROTECT YOUR PERSONAL INFORMATION?

14. RETENTION AND DESTRUCTION OF PERSONAL INFORMATION

15. ACCESSING, CORRECTING, DE-INDEXING AND PORTABILITY OF YOUR PERSONAL INFORMATION

16. WITHDRAWING YOUR CONSENT

17. CHANGES TO OUR PRIVACY POLICY

18. CONTACT DETAILS FOR THE PRIVACY OFFICER

APPENDIX A

1.	PURPOSE
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).

1. PURPOSE

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
2.1	This Policy generally applies to: any personal information of a factual or subjective nature about an identifiable individual collected through the Websites and/or Platforms on which this Policy is posted, or through any other interactions you may have with us; WFH staff members (regular employees, temporary employees and contractual resources) and senior management who handle personal information held by WFH; visitors to our Websites and/or Platforms, our volunteers and Board members, and any person or company acting for or on behalf of WFH.
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.

5.	HOW DO WE COLLECT YOUR CONSENT?
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.

10.	PROTECTION OF THE PRIVACY OF MINORS
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.

12.	SHARING PERSONAL INFORMATION OUTSIDE QUÉBEC
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.

17.	CHANGES TO OUR PRIVACY POLICY
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
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
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
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: Consent: where you have given us your consent, you have given us permission to do so, or where processing is necessary for the performance of a service you have requested; or Legitimate interests: for example, we may process your personal information to protect you, us, or others from threats (such as security threats or fraud), to comply with laws that apply to us.
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
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: The right to delete the information we have on you. Whenever made possible, you can request deletion of your personal information, in which case we will carry out this request unless certain exceptional reasons arise permitting us to keep certain information about you; The right to object. You have the right to object to our processing of your personal information in certain circumstances, such as those described in the “Legitimate interests” section 1.1 b) above. We may however continue to process your personal Information unless your interests, rights and freedoms override our legitimate interests; and The right of restriction. You have the right to request that we restrict or limit the ways in which we process your personal information for instance where you believe your data is inaccurate. Please note that we may ask you to verify your identity before responding to such requests.

1. PURPOSE

1.2 This Policy replaces and updates the WFH Website Privacy Policy (IT 003).

2. SCOPE

2.1

This Policy generally applies to:

any personal information of a factual or subjective nature about an identifiable individual collected through the Websites and/or Platforms on which this Policy is posted, or through any other interactions you may have with us;
WFH staff members (regular employees, temporary employees and contractual resources) and senior management who handle personal information held by WFH;
visitors to our Websites and/or Platforms, our volunteers and Board members, and any person or company acting for or on behalf of WFH.

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"

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

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?

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

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: Improve the content, offering, appearance and usefulness of our Websites and/or Platforms; Send, subject to your right to withdraw your consent as set out in this Policy, periodic emails; Personalize your experience by responding to your needs; Provide you with information or resources you have requested; Process a donation and issue tax receipts; Meet legal and regulatory requirements; Prevent potentially prohibited or illegal activities for risk management, fraud detection and security purposes.
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?

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: The domain name of your internet service provider; Your computer's truncated IP address (your IP address is changed, making it impossible to link to you); The type of browser (Chrome, Edge, Firefox, Safari, etc.) and operating system (Windows, Mac OS, etc.) used; The date and time of your visit; The pages you consult and the duration of these consultations; The address of the referring site, if you access WFH Websites and Platforms from another site. WFH retains only the information necessary to count the number of visitors, the most frequently visited pages, the technology used by visitors, the referring sites and the country of origin of visitors. This information is not used in any way to compile, communicate or exchange lists of users/visitors.
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

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. RESPONSE TO JOB OFFERS

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

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?

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

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?

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: Information stored in a protected database; Encrypted communications using the TLS protocol; Access to your personal information is restricted to those employees who need it to perform their duties (authorized and/or concerned persons) — these employees will treat the information as strictly confidential and will not give access to this information to any unauthorized person; Report any violation of this Policy or the Acts to the WFH Privacy Officer; Network monitoring software; Anti-virus and anti-malware; End-user device encryptions; Passwords and multi-factor authentication; Firewall; Secure Web site donation page; content encrypted or encoded to make information unreadable; Paper files kept in locked filing cabinets wherever possible; Access codes to WFH premises; Security personnel.
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

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

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

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

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

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
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

APPENDIX A
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: Consent: where you have given us your consent, you have given us permission to do so, or where processing is necessary for the performance of a service you have requested; or Legitimate interests: for example, we may process your personal information to protect you, us, or others from threats (such as security threats or fraud), to comply with laws that apply to us.
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
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: The right to delete the information we have on you. Whenever made possible, you can request deletion of your personal information, in which case we will carry out this request unless certain exceptional reasons arise permitting us to keep certain information about you; The right to object. You have the right to object to our processing of your personal information in certain circumstances, such as those described in the “Legitimate interests” section 1.1 b) above. We may however continue to process your personal Information unless your interests, rights and freedoms override our legitimate interests; and The right of restriction. You have the right to request that we restrict or limit the ways in which we process your personal information for instance where you believe your data is inaccurate. Please note that we may ask you to verify your identity before responding to such requests.

The use of all websites and Platforms belonging to the World Federation of Hemophilia (WFH) is subject to the following terms and conditions:

By using these websites and/or Platforms, you agree to its terms and conditions, effective as of the date you first use these websites and/or Platforms.
The World Federation of Hemophilia reserves the right to change these terms and conditions at any time by posting a modification notice online. Continued use of these websites and/or Platforms following the posting of changes constitutes your acceptance of these terms, as modified.
You agree to use these websites and/or Platforms only for lawful purposes and in a manner that does not infringe the rights of third parties or restrict or impede their enjoyment of use of this site.
These websites and/or Platforms and the information contained therein, names, images, photographs, and logos concerning or making reference to the World Federation of Hemophilia are provided “as is” without any additional representation or condition and without any implicit or explicit guarantee of any sort. Under no circumstance will the World Federation of Hemophilia be responsible for any damages, including, but not limited to, indirect damages, or any other damages caused by the use of or related to the loss of use of the websites and/or Platforms, whether by contract or negligence.
The World Federation of Hemophilia does not guarantee the site’s operations will not be interrupted and/or are exempt from error, or shortcomings will be corrected.
The World Federation of Hemophilia does not guarantee that the websites and/or Platforms or server will be free of viruses or bugs, or even its full functionality or the precision and exactness of its content.
Copyright restrictions:
- All information, photographs, graphics, and other material on these websites and/or Platforms are protected by copyright. While users of these websites and/or Platforms may use the content for personal, non-commercial use, none of the content of these websites and/or Platforms 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.
- Notwithstanding the above, certain documents and photos have been published on these websites and/or Platforms with the consent of the said copyright owners (who are not the World Federation of Hemophilia). All rights to these documents and/or photos are reserved and may not be reproduced without the consent of the copyright owners.
- The WFH 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 websites and/or Platforms, please send your request to [email protected].
- The logo of the World Federation of Hemophilia and its explicitly associated graphic image elements may not be reproduced for commercial or promotional purposes without formal authorization from World Federation of Hemophilia.
If you have any questions about the practices of our websites and/or Platforms or suggestions on how to make these websites and/or Platforms more accessible, please contact us at [email protected].
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.
The World Federation of Hemophilia respects the privacy of its members and visitors to these websites and/or Platforms. In this regard, please refer to our Digital Platforms Privacy Policy.
In the event of any conflict between the terms and conditions of use herein and any specific guidelines or terms of use appearing on these websites and/or Platforms relating to specific material, the latter shall prevail. If there is a conflict between the conditions and/or regulations of this site and those applying to a specific document that may be posted, the latter takes precedent.
These terms and conditions of use shall be governed by and construed in accordance with the laws of Canada and Quebec. Any dispute shall be subject to the exclusive jurisdiction of the courts of Canada and Quebec. If the terms and conditions of use are not accepted in their entirety, use of these websites and/or Platforms must cease immediately.

Noticias de nuestros aliados corporativos

En esta sección de la página Internet de la FMH, los fabricantes de productos de tratamiento pueden publicar comunicados de prensa de interés para la comunidad mundial de trastornos de la coagulación.

La información aquí publicada de ninguna manera representa el respaldo de la FMH a un producto específico. Las declaraciones y opiniones expresadas aquí no necesariamente representan las opiniones, políticas o recomendaciones de la FMH.

Lista de los comunicados de prensa más recientes están disponibles únicamente en inglés.

Spark Therapeutics, a member of the Roche Group, introduces a new FVIII gene therapy variant while discontinuing the phase 3 dirloctocogene samoparvovec gene therapy study
December 6, 2024 – Spark Therapeutics has announced the decision to discontinue the phase 3 study of dirloctocogene samoparvovec gene therapy, while introducing an enhanced-function Factor VIII variant, aiming to develop a durable gene therapy product. Building on the capsid technology and scientific insights from the dirloctocogene samoparvovec program, Spark plans to initiate a phase 2b clinical study of the enhanced-function variant in the second half of 2025. The phase 3 dirloctocogene samoparvovec study was stopped before any participants were dosed, and the decision was not related to safety concerns with dirloctocogene samoparvovec.

European Commission approves marstacimab treatment for hemophilia A or B
November 20, 2024 — The European Commissionhas approved marstacimab—developed by Pfizer—for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adult and adolescent patients 12 years of age and older with hemophilia A without factor VIII inhibitors or hemophilia B without factor IX inhibitors (neutralizing antibodies). A notable benefit of marstacimab is that it is delivered subcutaneously once weekly through a pre-filled pen or syringe. LINK

Centessa Pharmaceuticals announces discontinuation of SerpinPC development
November 12, 2024 — Centessa Pharmaceuticals will discontinue the global clinical development of SerpinPC, an investigational serine protease inhibitor (SERPIN) engineered to specifically inhibit Activated Protein C (APC). SerpinPC was observed to have a favourable safety and tolerability profile; however, considering the evolving treatment and market landscape for hemophilia B, including the recent FDA approval of a similar product, Centessa decided to stop any further investment in this program. LINK

Spark Therapeutics pauses Phase 3 dirloctocogene samoparvovec gene therapy clinical study
October 16, 2024 — The following announcement was received by Spark:
“After careful consideration, Spark Therapeutics, a member of the Roche Group, has elected to pause the Phase 3 dirloctocogene samoparvovec gene therapy clinical study while we evaluate the possibility to further transform outcomes for hemophilia A patients with an adeno-associated virus (AAV) gene therapy. This pause is not related to safety concerns with dirloctocogene samoparvovec. Spark will continue to work with investigators to ensure the necessary long-term follow-up with patients who have received dirloctocogene samoparvovec. Spark is dedicated to developing gene therapies that demonstrate safety, efficacy, durability, and predictability. Spark will provide an update as soon as they are able.”

FDA approves marstacimab-hncq treatment for hemophilia A or B
October 11, 2024 — The U.S. Food and Drug Administration (FDA) has approved marstacimab-hncq—developed by Pfizer—for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adult and pediatric patients 12 years of age and older with hemophilia A without factor VIII inhibitors or hemophilia B without factor IX inhibitors (neutralizing antibodies). A notable benefit of marstacimab-hncq is that it is delivered subcutaneously once weekly through a pre-filled pen or syringe. LINK

Fidanacogene elaparvovec gene therapy approved for Europe
July 25, 2024 — The European Commission has approved fidanacogene elaparvovec, an adeno-associated viral (AAV) vector-based gene therapy for the treatment of hemophilia B in Europe. Developed by Pfizer, the treatment is for adults (aged 18 years or older) with moderately severe to severe hemophilia B (congenital Factor IX deficiency) who are negative for neutralizing antibodies to variant AAV serotype Rh74. LINK

NEJM publishes phase 3 data supporting the use of efanesoctocog alfa for treating children with severe hemophilia A
July 18, 2024 — Full results from the XTEND-Kids phase 3 study published in The New England Journal of Medicine (NEJM) highlights the efficacy, safety, and pharmacokinetic profile of Antihemophilic Factor (Recombinant), Fc-VWF-XTEN Fusion Protein. Efanesoctocog alfa, a first-in-class, high-sustained factor VIII replacement therapy, is approved for adults and children with hemophilia A for routine prophylaxis and on-demand treatment to control bleeding episodes as well as for perioperative management (surgery). LINK

U.S. FDA approves gene therapy for hemophilia B
April 26, 2024 — Pfizer Inc. announced today that the U.S. Food and Drug Administration (FDA) has approved fidanacogene elaparvovec-dzkt for the treatment of adults with moderate to severe hemophilia B (congenital factor IX deficiency) who:

Currently use factor IX prophylaxis therapy, or
Have current or historical life-threatening hemorrhage, or
Have repeated, serious spontaneous bleeding episodes, and,
Do not have neutralizing antibodies to the adeno-associated virus serotype used

LINK

Fidanacogene elaparvovec gene therapy approved for the treatment of hemophilia B

January 3, 2024 — Health Canada has approved fidanacogene elaparvovec, an adeno-associated viral (AAV) vector-based gene therapy for the treatment of hemophilia B which has been developed by Pfizer. The treatment is for adults (aged 18 years or older) with moderately severe to severe hemophilia B (congenital Factor IX deficiency) who are negative for neutralizing antibodies to variant AAV serotype Rh74. LINK

BioMarin Announces First Person Treated Commercially with valoctocogene roxaparvovec-rvox
August 30, 2023 — BioMarin Pharmaceutical Inc. announced today that an individual in Germany with severe hemophilia A was treated with valoctocogene roxaparvovec-rvox, marking the first time that this gene therapy has been given commercially in Europe. LINK

Roche discontinues hemophilia A gene therapy treatment candidate
July 28, 2023 — Roche is discontinuing the development of a mid-stage gene therapy candidate which was previously being assessed as a treatment for hemophilia A patients with inhibitors to factor VIII, the company announced Thursday. LINK

U.S. Food and Drug Administration Approves BioMarin’s valoctocogene roxaparvovec-rvox, the first gene therapy for adults with severe hemophilia A
June 29, 2023 — BioMarin today announced that the United States Food and Drug Administration (FDA) approved valoctocogene roxaparvovec-rvox gene therapy for the treatment of adults with severe hemophilia A (congenital factor VIII (FVIII) deficiency with FVIII activity < 1 IU/dL) without antibodies to adeno-associated virus serotype 5 (AAV5) detected by an FDA-approved test. The one-time, single-dose infusion is the first approved gene therapy for severe hemophilia A in the U.S. LINK

CSL Behring Announces the first patient has received FDA-Approved etranacogene dezaparvovec-drlb for hemophilia B
June 20, 2023 — Etranacogene dezaparvovec-drlb (Hemgenix), the first FDA approved gene therapy for hemophilia B, has now been administered for the first time as an approved product to a person with hemophilia B. Hemgenix is also approved for use in the EU and has been granted conditional marketing authorization by the UK’s Medicines and Healthcare product Regulatory Agency. LINK

Two fitusiran Phase 3 studies published in The Lancet and The Lancet Haematology highlight potential to address unmet needs across all types of hemophilia.
April 4, 2023 — Both Phase 3 studies achieved their primary and secondary endpoints; fitusiran prophylaxis demonstrated significant and clinically meaningful improvements in bleed protection in people with hemophilia with and without inhibitors. LINK

BioMarin provides update on FDA review of valoctocogene roxaparvovec gene therapy for adults with severe hemophilia A
March 6, 2023 — BioMarin Pharmaceutical Inc. announced today that it received notice this afternoon from the U.S. Food and Drug Administration (FDA) that the agency has extended review of the company’s Biologics License Application (BLA) for valoctocogene roxaparvovec gene therapy for adults with severe hemophilia A. The FDA determined that the submission of the three-year data analysis from the ongoing Phase 3 GENEr8-1 study constituted a Major Amendment due to the substantial amount of additional data and set a new PDUFA Target Action Date of June 30, 2023. The company had previously communicated that this data submission could be qualified as a Major Amendment. LINK

Completed XTEND-Kids Phase 3 Sanofi and Sobi study strengthens potential of Antihemophilic Factor (Recombinant), Fc-VWF-XTEN Fusion Protein-ehtl for treatment of children <12 years of age with hemophilia A
March 2, 2023 — The XTEND-Kids phase 3 Sanofi and Sobi study evaluating the safety, efficacy and pharmacokinetics of Antihemophilic Factor (Recombinant), Fc-VWF-XTEN Fusion Protein-ehtl as once-weekly prophylaxis in previously treated patients <12 years of age with severe hemophilia A met its primary endpoint of safety, with no FVIII inhibitors detected in 74 children, with more than 50 children experiencing at least 50 exposure days, nearly a full year of treatment. The completion of XTEND-Kids represents the final milestone needed for regulatory submission in the EU. LINK

FDA approves once-weekly Antihemophilic Factor (Recombinant), Fc-VWF-XTEN Fusion Protein-ehtl a new class of factor VIII therapy for hemophilia A
February 23, 2023 – Sanofi announces that the U.S. Food and Drug Administration (FDA) has approved Antihemophilic Factor (Recombinant), Fc-VWF-XTEN Fusion Protein-ehtl, previously referred to as efanesoctocog alfa, a first-in-class, high-sustained factor VIII replacement therapy. This treatment is indicated for routine prophylaxis and on-demand treatment to control bleeding episodes, as well as perioperative management (surgery) for adults and children with hemophilia A. LINK.

NEJM publishes once-weekly efanesoctocog alfa Phase 3 data for people with hemophilia A
January 25, 2023 – Pivotal study data published in The New England Journal of Medicine (NEJM) highlights the efficacy, safety, and pharmacokinetic profile of efanesoctocog alfa, an investigational treatment for hemophilia A. These data demonstrate that efanesoctocog alfa delivered normal to near-normal factor activity levels (>40%) for the majority of the week with once-weekly dosing. LINK

BioMarin Announces Stable and Durable Annualized Bleed Control at 3 years for ROCTAVIAN™
January 8, 2023 — BioMarin Pharmaceutical Inc. today announced positive results from three years of follow up from its ongoing global Phase 3 GENEr8-1 study of ROCTAVIANTM(valoctocogene roxaparvovec), an investigational one-time gene therapy for the treatment of adults with severe hemophilia A. This is the largest and longest global Phase 3 study to date for any gene therapy in hemophilia with 134 participants. LINK

Pfizer Announces Positive Top-Line Results from Phase 3 Study of Hemophilia B Gene Therapy Candidate
December 29, 2022 — Pfizer Inc. today announced positive top-line results from the Phase 3 BENEGENE-2 study evaluating fidanacogene elaparvovec, an investigational gene therapy, for the treatment of adult males with moderately severe to severe hemophilia B. LINK

EMA recommends granting a conditional marketing authorisation in EU for Hemgenix
December 16, 2022 — The European Medicines Agency (EMA) has recommended granting a conditional marketing authorisation in the European Union (EU) for CSL Behring GmbH’s Hemgenix (etranacogene dezaparvovec) for the treatment of severe and moderately severe haemophilia B in adults who do not have factor IX inhibitors (auto-antibodies produced by the immune system which make factor IX medicines less effective). Hemgenix is the first gene therapy to treat haemophilia B. It is delivered as a single infusion. LINK

CHMP recommends expansion of EU label for emicizumab to include people with moderate hemophilia A
December 16, 2022 — Roche announced that the European Medicines Agency’s (EMA) Committee for Medicinal Products for Human Use (CHMP) has recommended expansion of the emicizumab European Union (EU) marketing authorisation. If approved, the therapy would also be indicated for the routine prophylaxis of bleeding episodes in people with hemophilia A without factor VIII inhibitors who have moderate disease (FVIII ≥1% and ≤ 5%) with a severe bleeding phenotype. LINK.

U.S. Food and Drug Administration approves CSL’s HEMGENIX^® (etranacogene dezaparvovec-drlb), the first gene therapy for hemophilia B
November 22, 2022 — CSL today announced that the U.S. Food and Drug Administration (FDA) approved HEMGENIX^® (etranacogene dezaparvovec-drlb), the first one-time gene therapy for appropriate adults with hemophilia B. HEMGENIX is approved for the treatment of adults with hemophilia B who currently use factor IX prophylaxis therapy, or have current or historical life-threatening hemorrhage or have repeated, serious spontaneous bleeding episodes. LINK

Freeline takes difficult decision to not progress their hemophilia B program into Phase 3 development
November 15, 2022 — As a result of a previously announced evaluation of its investigational gene therapy program for hemophilia B, Freeline has decided to focus its resources on other programs, and stop investment in further development of it’s hemophilia B program without a partner. LINK

First Gene Therapy for Adults with Severe Hemophilia A, BioMarin’s ROCTAVIAN (valoctocogene roxaparvovec), Approved by European Commission (EC) SAN RAFAEL, Calif.
Aug. 24, 2022 — BioMarin Pharmaceutical Inc. (NASDAQ: BMRN) today announced that the European Commission (EC) has granted conditional marketing authorization (CMA) to ROCTAVIAN (valoctocogene roxaparvovec) gene therapy for the treatment of severe hemophilia A (congenital Factor VIII deficiency) in adult patients without a history of Factor VIII inhibitors and without detectable antibodies to adeno-associated virus serotype 5 (AAV5). LINK

Monkeypox Virus and Plasma Protein Therapies
27 June 2022 — PPTA considers that the current MPXV outbreak is not a concern for the safety margins of plasma protein therapies manufactured by PPTA member companies. This assessment is also shared by other concerned parties (AABB, WHO). PDF

Precision BioLogic Launches New Product to Improve Testing for Hemophilia B
MONTREAL – May 9, 2022 /CNW/ — Precision BioLogic Inc., a leading developer of hemostasis diagnostic products, is pleased to announce the launch of its new CRYOcheck Chromogenic Factor IX assay in Canada, the European Union, Australia, and New Zealand following market authorization by Health Canada and respective in-country regulatory authorities. The announcement was made at the World Federation of Hemophilia Congress taking place in Montreal, May 8–11, 2022. LINK

European Medicines Agency Commences Review of Novel Gene Therapy Candidate Etranacogene Dezaparvovec for People with Hemophilia B
MARBURG, GERMANY – March 28, 2022 — Global biotherapeutics leader CSL Behring today announced that the European Medicines Agency (EMA) has accepted the Marketing Authorization Application (MAA) for etranacogene dezaparvovec (EtranaDez) under its accelerated assessment procedure. LINK

BioMarin Announces Publication in New England Journal of Medicine of One-Year Results from Phase 3 Pivotal Trial with Valoctocogene Roxaparvovec Gene Therapy in Adults with Severe Hemophilia A
SAN RAFAEL, Calif. – Mar. 17, 2022 /PRNewswire/, Ozelo, M. et al., Valoctocogene Roxaparvovec Gene Therapy for Hemophilia A. N Engl J Med 2022; 386:1013-1025, DOI: 10.1056/NEJMoa2113708 — BioMarin Pharmaceutical Inc. (NASDAQ: BMRN) today announced publication of results from the Phase 3 GENEr8-1 study of valoctocogene roxaparvovec, an investigational gene therapy for the treatment of adults with severe hemophilia A, in the New England Journal of Medicine (NEJM). LINK

Biomarin gives an update and reports a serious adverse event for its Phase 3 hemophilia A gene therapy study
Feb. 4, 2022 — An update for the hemophilia community from BioMarin, regarding the ongoing Phase 3 BioMarin hemophilia A gene therapy study, and a serious adverse event deemed, by the Independent Data Safety Monitoring Committee, unrelated to the investigational gene therapy from the phase 1/2 study. PDF

BioMarin Announces Stable and Durable Annualized Bleed Control in the Largest Phase 3 Gene Therapy Study in Adults with Severe Hemophilia A
SAN RAFAEL, Calif. – Jan. 9, 2022 — BioMarin Pharmaceutical Inc. (NASDAQ: BMRN) today announced positive results from its ongoing global Phase 3 GENEr8-1 study of valoctocogene roxaparvovec, an investigational gene therapy for the treatment of adults with severe hemophilia A. This is the largest global Phase 3 study to date for any gene therapy in hemophilia, with 134 participants. LINK

Sigilon Therapeutics Announces Strategic Reprioritization
CAMBRIDGE, Mass. – Dec. 13, 2021 (GLOBE NEWSWIRE) — Sigilon Therapeutics, Inc. (NASDAQ: SGTX), a biotechnology company that seeks to develop functional cures for chronic diseases through its Shielded Living Therapeutics platform, today announced a strategic reprioritization to enable the Company to focus on MPS-1 and diabetes. PDF

Sigilon Therapeutics Announces Update on SIG-001 Phase 1/2 Study in Hemophilia A
CAMBRIDGE, Mass. – Nov. 29, 2021 (GLOBE NEWSWIRE) — Sigilon Therapeutics, Inc. (NASDAQ:SGTX), a biotechnology company that seeks to develop functional cures for chronic diseases through its Shielded Living Therapeutics platform, today reported that fibrosed spheres were observed during a retrieval procedure in a patient in its Phase 1/2 study of SIG-001 in severe or moderately severe hemophilia A. PDF

FDA places the Pfizer/Sangamo Therapeutics phase 3 AFFINE haemophilia A gene therapy study on clinical hold
November 5, 2021 — On Tuesday, November 4, the U.S. Food and Drug Administration (FDA) placed the Pfizer/Sangamo haemophilia A gene therapy programme, including the pivotal phase 3 AFFINE study ( NCT04370054 ), with giroctocogene fitelparvovec (SB-525 or PF-07055480), on clinical hold until the review of a proposed protocol amendment. ( Sangamo news release ). LINK

Spark Therapeutics’ SPK-8011 Suggests Stable and Durable Factor VIII Expression in Largest Phase 1/2 Gene Therapy Study in Hemophilia A to Date
PHILADELPHIA – July 21, 2021 — Spark Therapeutics, a member of the Roche Group (SIX: RO, ROG; OTCQX: RHHBY) and a fully integrated, commercial gene therapy company dedicated to challenging the inevitability of genetic disease, today announced updated data from the ongoing Phase 1/2 clinical trial of investigational SPK-8011 in hemophilia A during the International Society of Thrombosis and Hemostasis (ISTH) 2021 Virtual Congress (July 17-21). LINK

European Medicines Agency Validates BioMarin's Marketing Authorization Application for Valoctocogene Roxaparvovec to Treat Severe Hemophilia A
SAN RAFAEL, Calif. – July 15, 2021 (PRNewswire) — BioMarin Pharmaceutical Inc. (NASDAQ: BMRN) announced today that the European Medicines Agency (EMA) validated the Company's Marketing Authorization Application (MAA) for its investigational gene therapy, valoctocogene roxaparvovec, for adults with severe hemophilia A. With today's validation the MAA review can now commence. A CHMP opinion is anticipated in the first half of 2022. LINK

uniQure Announces Positive 52-Week Clinical Data from HOPE-B Pivotal Trial of Etranacogene Dezaparvovec Gene Therapy in Patients with Hemophilia B and Provides Regulatory Update
LEXINGTON, Mass. and AMSTERDAM, The Netherlands – June 22, 2021 (GLOBE NEWSWIRE) — uniQure N.V. (NASDAQ: QURE), a leading gene therapy company advancing transformative therapies for patients with severe medical needs, today announced positive 52-week clinical data on all patients from its pivotal, Phase III HOPE-B gene therapy trial of etranacogene dezaparvovec, an investigational adeno-associated virus five (AAV5)-based gene therapy for the treatment of patients with severe and moderately severe hemophilia B. These are the first clinical data to be reported from a Phase III gene therapy study in hemophilia B and, with 54 patients, the largest set of hemophilia B patients receiving a single gene therapy investigational product to date. LINK

European Medicines Agency Grants BioMarin's Request for Accelerated Assessment of Valoctocogene Roxaparvovec for Treatment of Severe Hemophilia A
SAN RAFAEL, Calif. – May 24, 2021 (PRNewswire) — BioMarin Pharmaceutical Inc. (NASDAQ: BMRN) announced today that the European Medicines Agency (EMA) has granted its request for accelerated assessment of valoctocogene roxaparvovec, for adults with severe hemophilia A. Accelerated assessment reduces the time frame for the EMA Committee for Medicinal Products for Human Use (CHMP) and Committee for Advanced Therapies (CAT) to review a MAA for an Advanced Therapy Medicinal Product (ATMP). A CHMP opinion is expected in the first half of 2022. LINK

CSL Behring Announces Closing of Global Commercialization and License Agreement with uniQure
KING OF PRUSSIA, PA, USA – May 6, 2021 — Global biotherapeutics leader CSL Behring today announced the closing of its global Commercialization and License agreement with uniQure (NASDAQ: QURE) for etranacogene dezaparvovec (AMT-061), a novel gene therapy for the treatment of hemophilia B. CSL Behring has been recognized as a global hematology leader for decades. The acquisition complements both CSL Behring’s cell and gene therapy scientific platform and its hematology product portfolio, which include other treatments for hemophilia B as well as therapies for treating hemophilia A, von Willebrand disease, thrombosis, and other life-threatening conditions. LINK

uniQure announces closing of commercialization and license agreement with CSL Behring
LEXINGTON, Mass. and AMSTERDAM, The Netherlands – May 06, 2021 (GLOBE NEWSWIRE) — uniQure N.V. (NASDAQ: QURE), a leading gene therapy company advancing transformative therapies for patients with severe medical needs, today announced that the waiting period under the Hart-Scott-Rodino Antitrust Improvements Act of 1976 for the global licensing agreement with CSL Behring for etranacogene dezaparvovec, an investigational gene therapy for patients with hemophilia B, expired on May 5, 2021, and the agreement became fully effective today, May 6, 2021. The agreement was contingent on completion of review under antitrust laws in the United States, Australia, and the United Kingdom. The antitrust review process is now complete in all three countries. PDF

uniQure Announces FDA Removes Clinical Hold on Hemophilia B Gene Therapy Program
LEXINGTON, Mass. and AMSTERDAM, The Netherlands – April 26, 2021 (GLOBE NEWSWIRE) — uniQure N.V. (NASDAQ: QURE), a leading gene therapy company advancing transformative therapies for patients with severe medical needs, announced today that the U.S. Food and Drug Administration (FDA) has removed the clinical hold on the Company’s hemophilia B gene therapy program after determining the Company satisfactorily addressed all issues identified by the FDA related to a single patient diagnosed with hepatocellular carcinoma (HCC) in the HOPE-B pivotal trial. PDF

uniQure Announces Findings from Reported Case of Hepatocellular Carcinoma (HCC) in Hemophilia B Gene Therapy Program
LEXINGTON, Mass. and AMSTERDAM, The Netherlands – March 29, 2021 (GLOBE NEWSWIRE) — uniQure N.V. (NASDAQ: QURE), a leading gene therapy company advancing transformative therapies for patients with severe medical needs, announced today the results of a comprehensive investigation into the case of hepatocellular carcinoma (HCC) diagnosed in one patient in the HOPE-B pivotal trial of etranacogene dezaparvovec. The results of the investigation found that it is highly unlikely the HCC was caused by etranacogene dezaparvovec. LINK

Takeda Announces Strategic Partnership to Accelerate the Development of Enzyre’s Diagnostic Technology Platform That Aims to Improve the Standard of Care for Patients with Bleeding Disorders
OSAKA, JAPAN – March 4, 2021 — Takeda Pharmaceutical Company Limited (TSE: 4502/NYSE:TAK) (“Takeda”) today announced it has entered into a strategic partnership with Enzyre to accelerate the development of Enzyre’s proprietary platform Enzypad to enable patients to test their blood coagulation in a home setting. The partnership builds on an existing research collaboration agreement with Enzyre signed in December 2019 and close collaboration over the last five years. LINK

Data at EAHAD 2021 Highlight Value of Takeda’s Leading Hematology Portfolio in Clinical Settings and Commitment to Patient-Focused Advancements
OSAKA, JAPAN – February 3, 2021 — Takeda Pharmaceutical Company Limited (TSE: 4502/NYSE:TAK) (“Takeda”) today announced that 14 abstracts from the company’s Hematology portfolio and pipeline are being presented as electronic posters at the Virtual European Association for Haemophilia and Allied Disorders Congress (EAHAD 2021). Data include multiple abstracts reinforcing the long-term efficacy and safety of Takeda’s hematology portfolio in clinical practice, supporting the value of these treatments in a real world setting. PDF

BioMarin Announces Positive Phase 3 Gene Therapy Trial Results in Adults with Severe Hemophilia A; Study Met All Primary and Secondary Efficacy Endpoints in One-Year Data Set
SAN RAFAEL, U.S.A. – January 10, 2021 — BioMarin Pharmaceutical Inc. today announced positive topline results from its ongoing global Phase 3 GENEr8-1 study of valoctocogene roxaparvovec, an investigational gene therapy for the treatment of adults with severe hemophilia A. LINK

UniQure Reports Development of Hepatocellular Carcinoma in a Gene Therapy Clinical Trial Participant
Lexington, MA and Amsterdam, the Netherlands – December 21, 2020 (BUSINESS WIRE) — UniQure, which is running a Phase 3 AAV5-Factor IX gene therapy study, reported today a case of hepatocellular carcinoma (HCC) in a trial participant1. HCC is a tumor that arises in the liver. LINK

Pfizer Doses First Participant in Phase 3 Study Evaluating anti-TFPI Investigational Therapy, Marstacimab, for People With Severe Hemophilia A and B With or Without Inhibitors
NEW YORK, U.S.A. – November 23, 2020 (BUSINESS WIRE) — Pfizer Inc. (NYSE: PFE) today announced that the first participant has been dosed in the Phase 3 BASIS study of marstacimab (PF-06741086), an anti-tissue factor pathway inhibitor (anti-TFPI) being evaluated for the treatment of people with severe hemophilia A or B, with or without inhibitors. LINK

uniQure Announces Positive Top-Line Data from the HOPE-B Pivotal Trial of Etranacogene Dezaparvovec Gene Therapy in Patients with Hemophilia B
LEXINGTON, Ma. – November 19, 2020 (GLOBE NEWSWIRE) — uniQure N.V. (NASDAQ: QURE), a leading gene therapy company advancing transformative therapies for patients with severe medical needs, today announced positive top-line data from its pivotal, Phase III HOPE-B gene therapy trial of etranacogene dezaparvovec, an investigational adeno-associated virus five (AAV5)-based gene therapy for the treatment of patients with severe and moderately severe hemophilia B. This is the first data set to be reported from a Phase III gene therapy study in hemophilia B and, with 54 patients, the largest set of patients receiving a single gene therapy investigational product to be reported to date. These clinical data were published today as a late-breaking abstract, one of only six accepted for presentation at the 62nd Annual Meeting of the American Society of Hematology (ASH) and will be featured as an oral presentation in the conference on December 8, 2020. LINK.

Takeda to Present Rare Bleeding Disorders Research at Thrombosis & Hemostasis Summit of North America (THSNA) 2020
CAMBRIDGE, Ma. and OSAKA, JAPAN – October 27, 2020 — Takeda Pharmaceutical Company Limited (TSE: 4502/NYSE:TAK) (“Takeda”), today presented four abstracts at the Thrombosis and Hemostasis Summit of North America (THSNA), highlighting Takeda’s commitment to advancing personalized care in people living with bleeding disorders. LINK

rHEALTH’s FVIII Point-of-Care Device Awarded $1.5M Direct-to- Phase II Grant from the NIH
BEDFORD, Ma. – October 8, 2020 — rHEALTH LLC, a Diagnose Yourself, Anywhere™ company, today announced that its technology is the subject of the award from the National Institute of Health (NIH). The award is to rHEALTH’s affiliate, the DNA Medicine Institute (DMI), which has granted rHEALTH commercial rights to the technology. The focus of the grant is to further develop the company’s fingerstick-based point-of-care technology for monitoring both FVIII and emicizumab. PDF

An update from Roche on the evolution of Hemlibra post-approval data communications
September 23, 2020 — At Roche we recognise and appreciate the interest that the haemophilia community has in regards to Hemlibra (emicizumab), specifically around the subject of its long-term efficacy and safety, both now and in the future. We understand that the subject of long-term safety for haemophilia treatments is an important topic also for the community, and at Roche we will continue to listen to the needs of the community and aspire to provide information that leads to better clinical decision making and patient care. PDF

New England Journal of Medicine publishes positive final results from phase 1/2a study of BIVV001 in people with severe haemophilia A
Stockholm & Paris – September 10, 2020 — The New England Journal of Medicine today published positive final results from the phase 1/2a trial evaluating the safety, tolerability and pharmacokinetics of BIVV001 (rFVIIIFc-VWF-XTEN) in adult patients with severe haemophilia A. BIVV001 is an investigational factor VIII therapy designed to provide higher bleed protection in a once-weekly prophylactic treatment regimen. Sobi (STO:SOBI) and Sanofi collaborate on the development and commercialization of BIVV001. LINK

BioMarin Receives Complete Response Letter (CRL) from FDA for Valoctocogene Roxaparvovec Gene Therapy for Severe Hemophilia A
SAN RAFAEL, Calif. – August 19, 2020 — BioMarin Pharmaceutical Inc. (NASDAQ: BMRN) today announced that the U.S. Food and Drug Administration (FDA) issued a Complete Response Letter (CRL) to the Company's Biologics License Application (BLA) for valoctocogene roxaparvovec gene therapy for severe hemophilia A on August 18, 2020. The FDA issues a CRL to indicate that the review cycle for an application is complete and that the application is not ready for approval in its present form. LINK

Precision BioLogic Inc. announces CRYOcheck™ Chromogenic Factor VIII Assay Cleared for Sale in U.S
HALIFAX – July 20, 2020 — Precision BioLogic Inc., a leading developer of hemostasis diagnostic products, is pleased to announce FDA 510(k) clearance and the launch of its new CRYOcheck Chromogenic Factor VIII assay in the U.S. This clearance follows authorizations received from regulatory authorities in Canada, the European Union, Australia, and New Zealand where the assay launched earlier this year. PDF

Takeda Provides Updates on Its Pharmacokinetic-guided Prophylaxis Studies at ISTH 2020, Reinforcing Its Commitment to Advancing Personalized Care for People with Bleeding Disorders
OSAKA, JAPAN – July 12, 2020 — Takeda Pharmaceutical Company Limited (“Takeda”) (TSE: 4502/NYSE:TAK) today announced that 13 abstracts are being presented from the company’s Hematology portfolio and pipeline at the International Society on Thrombosis and Haemostasis 2020 Virtual Congress (ISTH 2020). Among the data, Takeda spotlighted four abstracts to highlight its commitment to advancing personalized care through pharmacokinetic (PK)-guided prophylaxis in people living with hemophilia or von Willebrand Disease (VWD) – including scientific updates in patients with hemophilia A from the Phase 3 PROPEL and Phase 3b CONTINUATION studies investigating potential benefits of personalized TAK-660 (rurioctocog alfa pegol) prophylaxis. Two population studies into the PK/pharmacodynamic (PD) profiles of recombinant von Willebrand factor (rVWF), which provide data to assist in the optimization of rVWF personalized dosing strategies, were also presented. LINK

Spark Therapeutics Announces Updated Data on SPK-8011 from Phase 1/2 Clinical Trial in Hemophilia A at ISTH 2020 Virtual Congress
PHILADELPHIA, Pa. – July 12, 2020 — Spark Therapeutics, a member of the Roche Group (SIX: RO, ROG; OTCQX: RHHBY) and a fully integrated, commercial gene therapy company dedicated to challenging the inevitability of genetic disease, today announced updated data from three dose cohorts of the ongoing Phase 1/2 clinical trial of investigational SPK-8011 in hemophilia A. These data were presented at the International Society of Thrombosis and Hemostasis (ISTH) 2020 Virtual Congress by Principal Investigator Lindsey A. George, M.D., The Perelman School of Medicine, University of Pennsylvania and Children’s Hospital of Philadelphia. LINK

CSL Behring Agrees to Acquire Novel Late-Stage Gene Therapy Candidate for Hemophilia B Patients from uniQure
KING OF PRUSSIA, Pa. – June 24, 2020 — Global biotherapeutics leader CSL Behring announced today that it has agreed to acquire exclusive global license rights to commercialize an adeno-associated virus (AAV) gene therapy program, AMT-061 (etranacogene dezaparvovec), for the treatment of hemophilia B from uniQure (NASDAQ: QURE), a leading gene therapy company. The AMT-061 program, currently in Phase 3 clinical trials, could be one of the first gene therapies to provide potentially long-term benefits to patients with hemophilia B. LINK

BioMarin Provides Highlights of 4 Years of Clinical Data from Ongoing Phase 1/2 Study of Valoctocogene Roxaparvovec Gene Therapy for Severe Hemophilia A
SAN RAFAEL, Calif. – May 31, 2020 — BioMarin Pharmaceutical Inc. (NASDAQ: BMRN) announced today an update to its previously reported results of an open-label Phase 1/2 study of valoctocogene roxaparvovec, an investigational gene therapy treatment for adults with severe hemophilia A. The data have been submitted as a late-breaking abstract to the World Federation of Hemophilia (WFH) Virtual Summit to be held June 14-19, 2020. LINK

2021

2020

2021

2020

¿Sabía usted que…?

El Esquema Internacional de Valoración Externa de la Calidad (IEQAS, por su sigla en inglés) mejora y armoniza el diagnóstico de laboratorio auditando la eficacia de los sistemas internos de aseguramiento de la calidad de los laboratorios a fin de determinar sus niveles de competencia.

Lea toda la historia

Eventos próximos

Manténgase informado(a)

Manténgase al tanto de los acontecimientos más recientes en la comunidad de trastornos de la coagulación, desde avances médicos hasta eventos relevantes.

Disclaimer

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.

Fraud Alert

Unauthorized solicitations – Warning

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.

Hemophilia Alliance

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.

India - Mumbai

Año de designación del CIEHEMO: 2000

National Institute of Immunohaematology (ICMR) and KEM Hospital

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y hemostasia
Genética molecular
Cuidados dentales
Enfermería
Cuidados ortopédicos
Fisioterapia

India - Vellore

Año de designación del CIEHEMO: 2000

Christian Medical College, Vellore

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y hemostasia
Genética molecular con diagnóstico prenatal
Enfermería
Manejo musculoesquelético – Terapia física y ocupacional con fisiatría
Cirugía y cuidados ortopédicos
Banco de sangre
Cuidados dentales
Psicología/Servicios sociales
Diagnóstico prenatal

Senegal - Dakar

Año de designación del CIEHEMO: 2016

Centre International de Traitement de l’Hémophilie (CITH) de Dakar
Centre National de Transfusion Sanguin (CNTS)

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y hemostasia
Enfermería
Banco de sangre
Fisioterapia

Rusia – Moscú y San Petersburgo

Año de designación del CIEHEMO: 2010

National Medical Research Center of Hematology of the Russian Academy of Medical Sciences

Áreas de especialidad

Hematología adultos
Enfermería
Cirugía ortopédica

Países Bajos - Utrecht

Año de designación del CIEHEMO: 1996

Van Creveldkliniek
University Medical Centre Utrecht

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y hematología
Enfermería
Cirugía y cuidados ortopédicos
Fisioterapia/Terapia ocupacional
Psicología y servicios sociales

Japón - Nara

Año de designación del CIEHEMO: 1998

Nara Hemophilia Centre
Nara Medical University

Áreas de especialidad

Hematología pediátrica y adultos
Cuidados dentales
Diagnóstico de laboratorio y genética molecular
Enfermería
Cirugía y cuidados ortopédicos
Fisioterapia

Italia - Milán

Año de designación del CIEHEMO: 1972

Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre
Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico

Áreas de especialidad

Hematología pediátrica y adultos
Banco de sangre
Cuidados dentales
Valoración diagnóstica de defectos de la función plaquetaria
Diagnóstico de laboratorio y hemostasia
Genética molecular
Enfermería
Cirugía y cuidados ortopédicos
Fisioterapia
Psicología y servicios sociales

Israel - Tel Hashomer

Año de designación del CIEHEMO: 1993

National Hemophilia Center, Tel Hashomer
Sheba Medical Center

Áreas de especialidad

Hematología pediátrica y adultos
Cirugía ortopédica
Enfermería
Fisioterapia
Cuidados dentales
Diagnóstico de laboratorio (sin genética)
Psicología

París - Francia

Año de designación del CIEHEMO: 1972

Paris Haemophilia Centre (Necker (N) and Kremlin Bicêtre (KB) Hospitals)

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y hemostasia
Enfermería
Cuidados dentales
Cirugía y cuidados ortopédicos
Fisioterapia
Psicología y servicios sociales

Sudáfrica - Johannesburgo

Año de designación del CIEHEMO: 2016

Haemophilia Comprehensive Care Centre
Charlotte Maxeke Johannesburg Academic Hospital

Áreas de especialidad

Hematología pediátrica y adultos
Cuidados dentales
Diagnóstico de laboratorio y hemostasia
Enfermería
Cirugía ortopédica
Fisioterapia

Egipto – El Cairo

Año de designación del CIEHEMO: 2015

Shabrawishi Hospital, Egyptian Society of Hemophilia, and Cairo University

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y hemostasia
Enfermería
Genética molecular
Banco de sangre
Fisioterapia

Canadá - Toronto

Año de designación del CIEHEMO: 2018

University of Toronto Hemophilia Centres
St. Michael’s Hospital

Áreas de especialidad

Servicios hematológicos para adultos
Servicios de hematología pediátrica
Fisioterapia/Terapia ocupacional
Cuidados dentales
Cuidados ortopédicos (sin cirugía)
Diagnóstico de laboratorio
Enfermería
Psicología/Servicios sociales

Brasil - Campinas, SP

Año de designación del CIEHEMO: 2008

Hemocentro – “Unidade de Hemofilia Cláudio Luiz Pizzigatti Corrêa”
Hemocentro Unicamp, University of Campinas

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y genética molecular
Enfermería
Odontología
Cirugía y cuidados ortopédicos
Fisioterapia

Bélgica - Bruselas

Año de designación del CIEHEMO: 2013

Haemostasis and Thrombosis Unit
Division of Haematology
Cliniques universitaires Saint-Luc

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio
Cirugía y cuidados ortopédicos
Fisioterapia

Austria - Viena

Año de designación del CIEHEMO: 1972

Medical University of Vienna
Department of Medicine I
Clinical Division of Hematology and Hemostaseology

Áreas de especialidad

Hematología pediátrica y adultos

Australia - Melbourne

Año de designación del CIEHEMO: 2005

Ronald Sawers Haemophilia Treatment Centre

Áreas de especialidad

Hematología adultos
Diagnóstico de laboratorio y hemostasia
Cirugía y cuidados ortopédicos
Enfermería
Cuidados dentales
Banco de sangre
Psicología
Trabajo social

Argentina - Buenos Aires

Año de designación del CIEHEMO: 1974

Instituto Asistencial “Dr. Alfredo Pavlovsky”
(Fundación de la Hemofilia)

Instituto De Investigaciones Hematológicas “Dr. Mariano R. Castex” (IIHEMA
(Academia Nacional de Medicina)

Áreas de especialidad

Hematología pediátrica y adultos
Fisioterapia
Cuidados dntales
Cirugía y cuidados ortopédicos
Diagnóstico de laboratorio y diagnóstico genético
Enfermería
Psicología
Servicios sociales

Singapur - Singapur

Año de designación del CIEHEMO: 2002

Singapore General Hospital Haemophilia Treatment Clinic

Áreas de especialidad

Hematología adultos
Diagnóstico de laboratorio
Enfermería
Cuidados dentales
Cuidados ortopédicos (sin cirugía)
Fisioterapia
Psicología

España - Madrid

Año de designación del CIEHEMO: 2018

Hospital Universitario La Paz

Áreas de especialidad

Hematología pediátrica y adultos
Fisioterapia/Terapia ocupacional
Cuidados dentales
Cuidados ortopédicos (sin cirugía)
Diagnóstico de laboratorio
Enfermería
Psicología/Servicios sociales

España - Valencia

Año de designación del CIEHEMO: 1997

Haemostasis and Thrombosis Unit
Haematology Service, University and Polytechnic Hospital

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y hemostasia
Genética molecular
Enfermería
Cirugía y cuidados ortopédicos
Fisioterapia
Banco de sangre
Psicología y servicios sociales

Hemophilia of Georgia

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.

Premios a los hermanamientos del año

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)

National Bleeding Disorders Foundation

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.

Legacy Gift

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].

Disclaimer

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.

Website privacy policy

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.

Use of links

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.”

Use of text and images

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].

Accessibility

If you have suggestions on how to make the site more accessible, please contact us at [email protected].

Opt-Out or Change Your Contact Information

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.

Questions about our policies

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].

Fraud alert

Unauthorized solicitations – Warning

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.

Premio internacional de la FMH por servicios destacados - receptores

Premio internacional de la FMH al voluntariado por la atención de la salud - receptores

AÑOS PASADOS

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

Premio Pietrogrande

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

Suecia - Malmö

Año de designación del CIEHEMO: 1976

Malmö Centre for Thrombosis and Haemostasis
Department for Hematology and Coagulation Disorders, Skåne University Hospital
Skåne University Hospital

Áreas de especialidad

Hematología pediátrica y adultos
Banco de sangre (a pedido)
Cuidados y cirugía dentales
Diagnóstico de laboratorio y genética
Enfermería
Cirugía y cuidados ortopédicos
Fisioterapia

Premio Henri Horoszowski

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

Premio internacional Frank Schnabel de la FMH - receptores

AÑOS PASADOS

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

Escalas funcionales

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:

Puntaje de salud articular en la hemofilia
Enfermedad articular
Rango de moción/movimiento (RDM)
Puntaje de la FMH (Gilbert)
Puntaje de independencia funcional para la hemofilia (FISH por su sigla en inglés)

Conjuntos de datos de hemofilia del RMTC

Conjunto de datos mínimo del RMTC

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.

Conjunto de datos ampliado del 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.

Estados Unidos - Columbus, Ohio

Año de designación del CIEHEMO: 2018

Nationwide Children’s Hospital

Áreas de especialidad

Cuidados dentales
Diagnóstico de laboratorio
Enfermería
Cirugía y cuidados ortopédicos
Servicios de hematología pediátrica
Fisioterapia/Terapia ocupacional
Psicología/Servicios sociales

Estados Unidos - Houston, Texas

Año de designación del CIEHEMO: 2000

Gulf States Hemophilia and Thrombophilia Center
University of Texas Health Science Center at Houston

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y hemostasia
Enfermería
Banco de sangre
Fisioterapia/Terapia ocupacional
Psicología/Servicios sociales

Estados Unidos - Los Ángeles, California

Año de designación del CIEHEMO: 1970

Lifespan Orthopaedic Hemophilia Treatment Center at Luskin Orthopedic Institute for Children

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y hemostasia
Enfermería
Cirugía y cuidados ortopédicos
Fisioterapia
Psicología/Servicios sociales

Estados Unidos – Nueva York, Nueva York

Año de designación del CIEHEMO: 1993

Mount Sinai School of Medicine
Mount Sinai Medical Center

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y hemostasia
Enfermería
Cirugía y cuidados ortopédicos
Genética molecular
Servicios sociales

Estados Unidos - Rochester, Minnesota

Año de designación del CIEHEMO: 1974

Mayo (Rochester) Comprehensive Hemophilia Center, and International Hemophilia Training Center (WFH)
Mayo Clinic/Foundation and Mayo Medical School

Áreas de especialidad

Hematología pediátrica y adultos
Banco de sangre
Diagnóstico de laboratorio y hemostasia
Genética molecular
Enfermería
Cirugía y cuidados ortopédicos
Fisioterapia
Psicología/Servicios sociales

Estados Unidos - San Diego, California

Año de designación del CIEHEMO: 2018

Hemophilia & Thrombosis Treatment Center
University of California San Diego

Áreas de especialidad

Hematología adultos
Fisioterapia/Terapia ocupacional
Cuidados dentales
Cuidados ortopédicos (sin cirugía)
Diagnóstico de laboratorio
Enfermería
Psicología/Servicios sociales

Reino Unido – Londres

Año de designación del CIEHEMO: 1970

Katharine Dormandy Haemophilia Centre and Thrombosis Unit
Royal Free Hospital

Áreas de especialidad

Hematología adultos
Diagnóstico de laboratorio y hemostasia
Enfermería
Cirugía y cuidados ortopédicos
Fisioterapia/Terapia ocupacional
Genética molecular
Psicología/Servicios sociales

Reino Unido – Oxford

Año de designación del CIEHEMO: 1972

Oxford Haemophilia and Thrombosis Centre
Churchill Hospital

Áreas de especialidad

Hematología pediátrica y adultos
Diagnóstico de laboratorio y hemostasia
Cirugía y cuidados ortopédicos
Enfermería
Genética molecular
Fisioterapia/Terapia ocupacional
Psicología y servicios sociales

Reino Unido - Sheffield

Año de designación del CIEHEMO: 1992

Sheffield Haemophilia and Thrombosis Centre
Royal Hallamshire Hospital

Áreas de especialidad

Hematología adultos
Diagnóstico de laboratorio y hemostasia
Genética molecular

Tailandia - Bangkok

Año de designación del CIEHEMO: 1984

International Hemophilia Training Center – Bangkok
Ramathibodi Hospital
Mahidol University

Áreas de especialidad

Hematología pediátrica y adultos
Banco de sangre
Cuidados y cirugía dentales
Diagnóstico de laboratorio y hemostasia
Enfermería
Cirugía y cuidados ortopédicos
Fisioterapia
Psicología y servicios sociales

Nuestra historia

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.

Política de privacidad de las plataformas digitales de la FMH

INTRODUCTION

1.

PURPOSE

2.

SCOPE

3.

DEFINITION OF "PERSONAL INFORMATION"

4.

RESPONSIBILITIES OF WFH

5.

HOW DO WE COLLECT YOUR CONSENT?

6.

WHY WE COLLECT PERSONAL INFORMATION

7.

WHAT PERSONAL INFORMATION DO WE COLLECT?

8.

USE OF COOKIES

9.

RESPONSES TO JOB OFFERS

10.

PROTECTION OF THE PRIVACY OF MINORS

11.

DO WE DISCLOSE YOUR PERSONAL INFORMATION TO THIRD PARTIES?

12.

SHARING PERSONAL INFORMATION OUTSIDE QUÉBEC

13.

HOW DO WE PROTECT YOUR PERSONAL INFORMATION?

14.

RETENTION AND DESTRUCTION OF PERSONAL INFORMATION

15.

ACCESSING, CORRECTING, DE-INDEXING AND PORTABILITY OF YOUR PERSONAL INFORMATION

16.

WITHDRAWING YOUR CONSENT

17.

CHANGES TO OUR PRIVACY POLICY

18.

CONTACT DETAILS FOR THE PRIVACY OFFICER

APPENDIX A

APPENDIX A

Condiciones de uso de las plataformas digitales de la FMH

Noticias de nuestros aliados corporativos

¿Sabía usted que…?

Eventos próximos

Manténgase informado(a)

WHO WE ARE

SUPPORT

OUR WORK

COLLABORATE

Disclaimer

Fraud Alert

Unauthorized solicitations – Warning

QUIÉNES SOMOS

APOYO

NUESTRA LABOR

COLABORE

Hemophilia Alliance

India - Mumbai

Año de designación del CIEHEMO: 2000

Áreas de especialidad

India - Vellore

Año de designación del CIEHEMO: 2000

Áreas de especialidad

Senegal - Dakar

Año de designación del CIEHEMO: 2016

Áreas de especialidad

Rusia – Moscú y San Petersburgo

Año de designación del CIEHEMO: 2010

Áreas de especialidad

Países Bajos - Utrecht

Año de designación del CIEHEMO: 1996

Áreas de especialidad

Japón - Nara

Año de designación del CIEHEMO: 1998

Áreas de especialidad

Italia - Milán

Año de designación del CIEHEMO: 1972

Áreas de especialidad

Israel - Tel Hashomer

Año de designación del CIEHEMO: 1993