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:
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Advocacy

The World Federation of Hemophilia (WFH) plays a leadership role in global advocacy by convening the global bleeding disorders community to promote equitable access to care and to current and emerging treatments. We leverage global and regional advocacy work to enhance the impact of national advocacy initiatives related to policy, care delivery and procurement.

PACT

The new WFH Path to Access to Care and Treatment (PACT) Program is a 5-year initiative, ending in 2025 designed to improve outreach and diagnosis and increase access to sustainable care for people with inherited bleeding disorders. This will be achieved through training, education, partnerships, in-country initiatives, and evidence-based advocacy. To see the 2-year update on the WFH PACT program, click here.

The need

People with bleeding disorders’ communities face many challenges getting access to proper care in many countries around the world. The gap between observed versus expected people with hemophilia is even greater than it was estimated in the past—with only one third of the expected number of people with hemophilia having been identified globally so far. PACT aims to support the global bleeding disorders community by addressing these needs.

Pact goals

The PACT Program aims to:

Identify 20,000 new people with inherited bleeding disorders
Improve access to care through the training and education of patient leaders and healthcare providers on outreach, diagnosis, the management of bleeding disorders, and evidence-based advocacy
Increase government support to establish or expand existing national bleeding disorders care programs

Program components

The Program will be implemented through three key components.

Online training and education

The PACT Advocacy Academy provides NMO leaders and patient advocates with the necessary knowledge and skills to carry out successful evidence-based advocacy campaigns, including basic concepts and principles of care, access to therapies and procurement, an introduction to health economics, and the design and implementation of advocacy programs.

Yearly virtual training sessions for healthcare professionals focus on outreach, diagnosis, and the management of bleeding disorders. Ongoing training outcomes evaluation will be carried out to provide an assessment of additional needs and to gauge the capacity for progress.

National access plans

Tailored 4 to 5-year national access plans include personalized training, and on-the-ground support for outreach and advocacy campaigns to increase support from national governments. Collaboration between main stakeholders—the NMO, healthcare professionals and national governments—will be fostered to maximize the success of these programs.

Mentorship from subject-matter experts for NMOs in target countries support the implementation of national access plans. The duration of these mentorships can be from 6-months to 4-years, depending on local needs.

Global and regional meetings

Global and regional training and meetings (starting in 2022) will serve as a forum for sharing best practices and experiences on evidence-based advocacy between community leaders. These collaborative forums will bring together NMO leaders, healthcare professionals and government representatives to promote dialogue and increase engagement among stakeholders.

Call for expression of interest for mentors

The WFH is looking for volunteer subject matter experts to serve as WFH PACT Program mentors for NMOs in target countries and to support the implementation of their national access plans.

OBJECTIVE

The main objective of mentorship is to provide guidance and expertise to WFH NMOs in one or more of the thematic or organizational capacity areas listed below to maximize the impact of their PACT national access plans.

DURATION

The duration of mentorship will range from six months to four years and will be defined on a case-by-case basis, depending on local needs and the mentor’s availability.

AREAS OF EXPERTISE

The WFH is seeking mentors with extensive experience and expertise in one or more of the following areas:

National bleeding disorders programs and care delivery

Developing a national bleeding disorders (or hemophilia) program
Establishing national hemophilia or bleeding disorders councils or committees
Developing national treatment guidelines
Establishing hemophilia treatment centres

Advocacy and government support

Planning and implementing advocacy campaigns
Collecting and using data for advocacy
Understanding health economics and health technology assessments
Increasing access to safe therapies and procurement models
Managing relations with stakeholders

NMO organizational capacities and leadership

Supporting governance and leadership development
Enhancing NMO organizational development, including regional representation or chapters
Developing strategic plans
Writing a project proposal and managing project cycle
Developing communications plans
Engaging and retaining volunteers
Implementing fundraising and resource mobilization campaigns

NMO outreach and educational programs and services

Designing and implementing outreach programs to identify new people with bleeding disorders
Using digital tools in outreach and/or educational programs
Designing and implementing thematic projects related to any of the following:
- Awareness and education on VWD
- Youth leadership and engagement
- Awareness and education on issues related to women and girls with inherited bleeding disorders
Designing and implementing other patient or healthcare education and capacity-building programs
Developing patient registries and other data collection programs

how mentorship works

All individuals who apply to join the PACT Program as a mentor will receive a letter of acknowledgement and will be added to a database of prospective mentors. A matching process will follow, taking into consideration the mentor’s expertise and the needs of NMOs currently implementing national projects as part of the PACT Program. Once a suitable match is established, the mentor will be contacted to confirm their selection.

Next, an introductory meeting between the mentor and the NMO will be facilitated by WFH staff to discuss the objectives and scope of the mentorship and establish both parties’ willingness to work together. Once a mentorship starts, the WFH will ask both the mentor and the NMO to provide periodic progress reports.

Here are some examples of the type of support a mentor could provide to an NMO:

Provide guidance and advice on specific areas as defined in the agreed upon scope of mentorship
Review and provide feedback on various documents, policies, and guidelines (either national or internal for the NMO)
Present at a meeting or an event as a subject-matter expert

How to apply to become a WFH PACT Program mentor

Interested individuals with demonstrated experience and expertise in one of the areas listed above are invited to send their CV and the completed Mentor Expression of Interest Form to [email protected].

Introducing our 2023 Impact Report!

Discover the transformative outcomes of our initiatives, showcasing the positive change we have contributed to in the global bleeding disorders community.

Participating countries

The online training and education and the global and regional meeting components of PACT are available to all countries, while 20 countries have been selected to work on the development and implementation of national access plans. Countries are selected based on the following criteria:

Demographic and economic indicators
Strength and commitment of local leadership
Level of bleeding disorders care in their healthcare system
Overall potential for success

The following countries are enrolled in PACT: Argentina, Bangladesh, Bolivia, Brazil, China, Costa Rica, Egypt, India, Indonesia, Kenya, Malaysia, Mexico, Nepal, Nicaragua, Nigeria, Pakistan, Palestine, Senegal, Vietnam, and Zambia.

The PACT program is supported by funding from:

VISIONARY PARTNER

LEADERSHIP PARTNERS

PACT ADVOCACY ACADEMY

The PACT Advocacy Academy provides NMO leaders, patient advocates, and healthcare professionals (HCPs) with the necessary knowledge and skills to carry out successful evidence-based advocacy campaigns. The eight-month course includes the following topics:

Key concepts in bleeding disorders, principles of care, and advocacy
Advocacy skills and the design of a campaign
Key concepts in therapeutic products, procurement models, and tenders
Introduction to health economics and health technology assessment

PACT Advocacy Academy participants are selected through an annual open call for applications. The selection process for the 2025 cohort is open from August 1 to October 1, 2024.

For more information on how to apply, please email [email protected].

Since its inception in 2022, the PACT Advocacy Academy has had 72 participants from 44 countries. The course is currently offered in English, French and Spanish.

“One of the main learnings for me from the PACT Advocacy Academy was using systemic thinking to manage advocacy projects. I have applied stakeholder analysis in my advocacy work and conducted workshops about stakeholder mapping … to share my learnings with the Thai hemophilia youth group and with other rare disease patient groups.” – Ekawat Suwantaroj, WFH Board Member and Thai Hemophilia Foundation

“I would like to thank WFH for providing me with such a beautiful opportunity of studying with people of different regions.” – Participant, 2022

This course is created in collaboration between the World Federation of Hemophilia (WFH), the New York University Robert F. Wagner Graduate School of Public Service (NYU Wagner) and an expert working group.

Each topic takes place over six to eight weeks and includes one self-directed online learning module and two live interactive webinars. An online platform allows participants to track their progress and refer to previous modules.

Over the duration of the course, participants are required to begin their own real-life advocacy project for their NMO. For participants from PACT countries, this should be aligned with the PACT national access plan.

Learn more about the Advocacy Initiatives from WFH PACT Advocacy Academy:

If you have any questions about PACT Advocacy Academy program, please contact the WFH at [email protected].

EVIDENCE-BASED ADVOCACY

Data collected through WFH data collection programs are used to highlight discrepancies in care around the world, and create graphs, charts, infographics, and tools that can be used by NMOs and HCPs to help strengthen advocacy messaging.

Infographics

Infographics, based on data from the latest Annual Global Survey (AGS) and the World Bleeding Disorders Registry (WBDR), are available for download as an image, a PDF or as slides, and can be used for presentations and advocacy work.

AGS interactive graphs

The WFH has developed a user-friendly data visualization system, which includes real-time, customizable queries. This system allows the user to explore and compare recent and historical data to suit all reporting, research, and advocacy needs.

View and download graphs of AGS data developed using our new data collection system.

Topic-specific mini reports

WFH AGS mini reports are advocacy tools that provide more in-depth perspective and context to AGS data.

Peer-reviewed publications

Peer-reviewed publications on global data and patient registries relevant to hemophilia and other bleeding disorders are also available.

Stonebraker JS, Bolton-Maggs PHB, Brooker M, Evatt B, Iorio A, Makris M, O’Mahony B, Skinner MW, Coffin D, Pierce GF, Tootoonchian E, The World Federation of Hemophilia Annual Global Survey 1999‐2018. Haemophilia. 2020 Jul;26(4):591-600. doi: 10.1111/hae.14012. Epub 2020 Jun 4.

Iorio A, Stonebraker JS, Chambost H, Makris M, Coffin D, Herr C, Germini F; Data and Demographics Committee of the World Federation of Hemophilia, Establishing the Prevalence and Prevalence at Birth of Hemophilia in Males: A Meta-analytic Approach Using National Registries. Ann Intern Med. 2019 Oct 15;171(8):540-546. doi: 10.7326/M19-1208. Epub 2019 Sep 10.

Coffin D, Herr C, O’Hara J, Diop S, Hollingsworth R, Srivastava A, Lillicrap D, van den Berg HM, Iorio A, Pierce GF. World bleeding disorders registry: The pilot study. Haemophilia. 2018 Feb;e113-e116.

Iorio, A., Stonebraker, J. S., Brooker, M., Soucie, J. M. on behalf of the Data and Demographics Committee of the World Federation of Hemophilia (2017), Measuring the quality of haemophilia care across different settings: a set of performance indicators derived from demographics data. Haemophilia. 2017 Jan;23(1):e1-e7. doi: 10.1111/hae.13127. Epub 2016 Dec 8.

GENE THERAPY ROUND TABLE SERIES

The WFH Gene Therapy Round Table (GTRT) series was held from 2018 to 2022. It brought national member organizations (NMOs), patient advocates, healthcare professionals (HCPs), regulators and industry representatives together to share a dialogue on current global developments and the expected challenges related to gene therapy for hemophilia.

Interested in more events about Gene Therapy? The WFH will be hosting a New Technology and Gene Therapy Workshop in November 2024. Contact [email protected] to learn more.

Objectives

The objective of this series was to foster a better understanding of the challenges related to the development of gene therapy for people with hemophilia (PWH) around the world. Key challenges and discussions centred around global access to gene therapy, regulatory and financial challenges, the unknowns of gene therapy and long-term follow-up of safety and efficacy. Multi-stakeholder and global perspectives were also considered. The reports from the WFH GTRT have been published.

Gene Therapy Round Table Program Committee

Chair
Glenn Pierce, U.S.A.

Members
A revolving committee of eight health care professionals (HCPs), and people with a bleeding disorder and/or caregiver make up the program committee.

Previous programs are available here:

WFH GTRT PROGRAMS

Publications

Pierce GF et al., Haemophilia. 2020;26:443–449.

Pierce GF et al., Haemophilia, 2019 Mar;25(2):189-194.

Did you know?

The Annual Global Survey is a yearly cross-sectional survey of NMOs that includes country-level demographic and treatment-related data on PWH, VWD, rare factor deficiencies, and inherited platelet disorders.

Get the whole story

Upcoming events

Stay informed

Keep up to date on the latest developments in the bleeding disorders community, from medical advances to important events.

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

Year of IHTC designation: 2000

National Institute of Immunohaematology (ICMR) and KEM Hospital

Areas of Specialty

Adult and pediatric hematology
Laboratory diagnosis and hemostasis
Molecular genetics
Dental care
Nursing
Orthopedic care
Physiotherapy

India - Vellore

Year of IHTC designation: 2000

Christian Medical College, Vellore

Areas of Specialty

Adult and pediatric hematology
Laboratory diagnosis and hemostasis
Molecular genetics with antenatal diagnosis
Nursing
Musculoskeletal management – physical and occupational therapy with physiatry
Orthopedic care and surgery
Blood banking
Dental care
Psychology/Social services
Antenatal diagnosis

Singapore - Singapore

Year of IHTC designation: 2002

Singapore General Hospital Haemophilia Treatment Clinic

Areas of Specialty

Adult hematology
Laboratory diagnosis
Nursing
Dental care
Orthopedic care (no surgeries)
Physiotherapy
Psychology

Senegal - Dakar

Year of IHTC designation: 2016

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

Areas of Specialty

Adult and pediatric hematology
Laboratory diagnosis and hemostasis
Nursing
Blood banking
Physiotherapy

Russia - Moscow and St. Petersburg

Year of IHTC designation: 2010

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

Areas of Specialty

Adult hematology
Nursing
Orthopedic surgery

Netherlands - Utrecht

Year of IHTC designation: 1996

Van Creveldkliniek
University Medical Centre Utrecht

Areas of Specialty

Adult and pediatric hematology
Laboratory diagnosis and hematology
Nursing
Orthopedic care and surgery
Physiotherapy/Occupational therapy
Psychology and social services

Japan - Nara

Year of IHTC designation: 1998

Nara Hemophilia Centre
Nara Medical University

Areas of Specialty

Adult and pediatric hematology
Dental care
Laboratory diagnosis and Molecular genetics
Nursing
Orthopedic care and surgery
Physiotherapy

Italy - Milan

Year of IHTC designation: 1972

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

Areas of Specialty

Adult and pediatric hematology
Blood banking
Dental care
Diagnostic assessment of platelet functional defects
Laboratory diagnosis and hemostasis
Molecular genetics
Nursing
Orthopedic care and surgery
Physiotherapy
Psychology and social services

Israel - Tel Hashomer

Year of IHTC designation: 1993

National Hemophilia Center, Tel Hashomer
Sheba Medical Center

Areas of Specialty

Adult and pediatric hematology
Orthopedic surgery
Nursing
Physiotherapy
Dental care
Laboratory diagnosis (not genetics)
Psychology

France - Paris

Year of IHTC designation: 1972

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

Areas of Specialty

Adult and pediatric hematology
Laboratory diagnosis and hemostasis
Nursing
Dental care
Orthopedic care and surgery
Physiotherapy
Psychology and Social services

Spain - Madrid

Year of IHTC designation: 2018

Hospital Universitario La Paz

Areas of Specialty

Adult and pediatric hematology
Physiotherapy/occupational therapy
Dental care
Orthopaedic care (no surgery)
Laboratory diagnosis
Nursing
Psychology/social services

Spain - Valencia

Year of IHTC designation: 1997

Haemostasis and Thrombosis Unit
Haematology Service, University and Polytechnic Hospital

Areas of Specialty

Adult and pediatric hematology
Laboratory diagnosis and hemostasis
Molecular genetics
Nursing
Orthopedic care and surgery
Physiotherapy
Blood banking
Psychology and Social services

Egypt - Cairo

Year of IHTC designation: 2015

Shabrawishi Hospital, Egyptian Society of Hemophilia, and Cairo University

Areas of Specialty

Adult and pediatric hematology
Laboratory diagnosis and hemostasis
Nursing
Molecular genetics
Blood banking
Physiotherapy

Canada - Toronto

Year of IHTC designation: 2018

University of Toronto Hemophilia Centres
St. Michael’s Hospital

Areas of Specialty

Adult hematology services
Pediatric hematology services
Physiotherapy/occupational therapy
Dental care
Orthopaedic care (no surgery)
Laboratory diagnosis
Nursing
Psychology/social services

Brazil - Campinas, SP

Year of IHTC designation: 2008

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

Areas of Specialty

Adult and pediatric hematology
Laboratory diagnosis and molecular genetics
Nursing
Dentistry
Orthopedic care and surgery
Physiotherapy

Belgium - Brussels

Year of IHTC designation: 2013

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

Areas of Specialty

Adult and pediatric hematology
Laboratory diagnosis
Orthopedic care and surgery
Physiotherapy

Austria - Vienna

Year of IHTC designation: 1972

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

Areas of Specialty

Adult and pediatric hematology

Australia - Melbourne

Year of IHTC designation: 2005

Ronald Sawers Haemophilia Treatment Centre

Areas of Specialty

Adult hematology
Laboratory diagnosis and hemostasis
Orthopedic care and surgery
Nursing
Dental care
Blood banking
Psychology
Social work

Argentina - Buenos Aires

Year of IHTC designation: 1974

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

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

Areas of Specialty

Adult and pediatric hematology
Physiotherapy
Dental care
Orthopaedic care and surgery
Laboratory diagnosis and genetic diagnosis
Nursing
Psychology
Social services

South Africa - Johannesburg

Year of IHTC designation: 2016

Haemophilia Comprehensive Care Centre
Charlotte Maxeke Johannesburg Academic Hospital

Areas of Specialty

Adult and pediatric hematology
Dental care
Laboratory diagnosis and hemostasis
Nursing
Orthopedic surgery
Physiotherapy

Sweden - Malmö

Year of IHTC designation: 1976

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

Areas of Specialty

Adult and pediatric hematology
Blood banking (on request)
Dental care and surgery
Laboratory diagnosis and genetics
Nursing
Orthopedic care and surgery
Physiotherapy

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.

WFH President's Award - Recipients

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.

International Award for Outstanding Service - Recipients

International Lifetime Achievement Award - Recipients

Previous years

2012	Christine Lee United Kingdom
2006	Dr. Bruce Evatt United States

International Healthcare Volunteer Award - Recipients

Previous years

2012	Piet de Kleijn The Netherlands
2010	Dr. Mammen Chandy India
2008	Dr. Man-Chiu Poon Canada
2006	Dr. Norma de Bosch Venezuela
2004	Dr. Parttraporn Insarangkura Thailand Dr. Carol K. Kasper United States

Thailand - Bangkok

Year of IHTC designation: 1984

International Hemophilia Training Center – Bangkok
Ramathibodi Hospital
Mahidol University

Areas of Specialty

Adult and pediatric hematology
Blood banking
Dental care and surgery
Laboratory diagnosis and hemostasis
Nursing
Orthopedic care and surgery
Physiotherapy
Psychology and social services

Twins of the Year Awards

2022	Amman (Jordan) – Dublin (Ireland)
2021	Addis Ababa (Ethiopia) – Minneapolis (U.S.A) and Tehran (Iran) – Milan (Italy)
2020	Aluva (India) – Newcastle (UK)
2019	Yogyakarta / Solo (Indonesia) – Utrecht (Netherlands)
2018	Abidjan (Ivory Coast) – Brussels (Belgium)
2017	Santa Cruz de la Sierra (Bolivia) – Buenos Aires (Argentina)
2016	Kampala (Uganda) – London (UK)
2015	Varna (Bulgaria) – Bonn (Germany)
2014	Arequipa (Peru) – Los Angeles (USA)
2013	Davangere (India) – Liverpool (UK) Ludhiana (India) – Detroit (USA)
2012	Hanoi (Vietnam) – Melbourne (Australia)
2011	Manado (Indonesia) – Utrecht (Netherlands)
2010	Delhi (India) – Winnipeg (Canada) Yaoundé (Cameroon) – Geneva (Switzerland)
2009	Chisinau (Moldova) – Warsaw (Poland) Colombo (Sri Lanka) – Vellore (India)
2008	Gaborone (Botswana) – Philadelphia (USA)
2007	Vientiane (Laos) – Brest (France) Damascus (Syria) – Montpellier (France)
2006	Lima (Peru) – Fort Worth (USA)
2005	Yerevan (Armenia) – Minneapolis (USA) Casablanca (Morocco) – Caen (France)
2004	Beirut (Lebanon) – Geneva (Switzerland) Santo Domingo (Dominican Republic) – Caracas (Venezuela)
2003	Cairo (Egypt) – Knoxville (USA)
2002	Moscow (Russia) – Liverpool (UK) Panama – Valencia (Spain)
2001	Bangalore (India) – St. Louis (USA)
2000	Pune (India) – Bradford (UK)
1999	Montevideo (Uruguay) – Buenos Aires (Argentina) Tianjin (China) – Calgary (Canada)
1998	Plovdiv (Bulgaria) – Bonn (Germany)
1997	Bogota (Colombia) – Los Angeles (USA) Tartu (Estonia) – Stockholm (Sweden)
1996	Timisoara (Romania) – Munich (Germany) Riga (Latvia) – Munster (Germany)
1995	Klaipeda (Lithuania) – Malmo (Sweden)
1994	Bratislava (Slovakia) – Tel Hashomer (Israel)

Pietrogrande Prize

2023	Nicholas Goddard United Kingdom
2021	Axel Seuser Germany
2019	Dr. Adolfo Llinás Colombia
2017	Pamela Hilliard Canada
2015	Kathy Mulder Canada
2013	James Luck United States
2012	Piet de Kleijn The Netherlands
2011	Dr. Lily Heijnen The Netherlands
2010	Dr. Horacio Caviglia Argentina
2009	Jerome D. Wiedel United States
2008	Dr. Federico Fernández-Palazzi Venezuela
2007	Michael Heim Israel
2006	Brenda Buzzard United Kingdom
2005	Dr. Marvin Gilbert United States

Henri Horoszowski Award

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 Belgium	Association between multi-segment foot kinetics and blood induced joint damage in adult patients with hemophilic ankle arthropathy
2017	Fabio Souza Brazil	Decrease in joint inflammation, swelling and pain after a swimming protocol in animal model of experimental-induced hemarthrosis
2015	SM Javd Mortazavi Iran	Bilateral total knee arthroplasty in patients with hemophilia: A safe and cost-effective procedure
2013	Lize F.D. van Vulpen United States	A fusion protein of IL4 and IL10, is equally effective in protecting cartilage from blood-induced damage compared to the individual components
2012	Horacio Caviglia Argentina	Pseudotumor Surgery in Haemophilia A patients: Comparitive results between inhibitor and non-inhibitor patients
2011	Nick Goddard United Kingdom and Monique van Meegeren The Netherlands	Early onset administration of IL-4 and IL-10 prevents blood-induced cartilage damage in vitro
2010	Lydia Abad-Franch Spain	Influence of an Aquatic Training Protocol on the Reduced Risk of Cardiovascular Morbidity and Mortality in a Hemophiliac
2009	Sebastien Lobet Belgium	Impact of Hemophilia Ankle Arthropathy on Gait Disability: Analysis of Energetic and Mechanical Variables
2008	Jose Alberto Tlacuilo-Parra Mexico	Bone Turnover Markers and Bone Mineral Density in Children with Hemophilia
2007	Natalie Jansen The Netherlands	Protective Abilities of Interleukin-10 in Blood-induced Cartilage Damage
2006	Axel Seuser and E. Kusch Germany	Multi-Center Study of Orthopedic Outcome of the Lower Extremities in 249 Children with Hemophilia
2005	Frank van Genderen, Nico van Meeteren, Lily Heijnen, Piet de Kleijn, Marijke van den Berg, Paul Helders The Netherlands	The Hemophilia Activities List: Final development and validation of a hemophilic-specific self-assessment questionnaire on functional abilities
2004	Goris Roosendaal, Zalima N Jahangier, Kim MG Jacobs, Johannes WJ Bijlsma, Floris PJG Lafeber The Netherlands	Radiosynoviorthesis using YTTRIUM-90 results in adverse direct effects on cartilage: a human in vitro study
2003	Axel Seuser, Thomas Wallny, Günter Schumpe, Elmar Trunz, Hans-Hermann Brackman Germany	How to advise young haemophiliacs to find the right sport? A new and safe algorithm
2002	James Luck, Jr. and Mauricio Silva United States	Long-Term Review of Total Knee Arthroplasty
2001	Federico Fernández-Palazzi Venezuela	Oxytetracycline Chlorohydrate: A new material for chemical synovial orthoses
2000	Horacio Caviglia Argentina	Pseudotumours
1999	William J. Ribbans and J.L. Hicks United Kingdom	Communication and Co-operation for the New Millennium – The Future of the Musculoskeletal Committee in the 21st Century
1998	Adolfo Llinas, Mauricio Silva, Monica Duarte, Gonzalo Ucros, Graciela Perini, Angela Maria Cerquera, Andres Forero Colombia	Chromic phosphate synoviorthesis without age restriction should be the first treatment option for chronic active hemophilic synovitis

International Frank Schnabel Volunteer Award - Recipients

Previous years

2012	Martha Patricia Monteros Rincon Mexico
2010	Antonia Luque de Garrido Venezuela
2008	Jean Michel Bouchez France
2006	Yuri Zhulyov Russia
2004	Ashok Verma India

Functional Scales

The outcomes of interest collected by the WBDR include demographic characteristics, clinical and treatment-related outcomes, burden of disease outcomes, and patient-reported outcomes.

The WBDR includes five functional scales as part of its extended data set:

Haemophilia Joint Health Score (HJHS)
Joint Disease
Range of motion (ROM)
WFH Score (Gilbert)
Functional Independence Score in Hemophilia (FISH)

WBDR hemophilia data sets

WBDR Minimal Data Set

The WBDR Minimal Data Set (MDS) is a set of data on demographics, diagnosis, symptoms and treatment which are collected on patients participating in the WBDR.

WBDR Extended Data Set

The WBDR Extended Data Set (EDS) is a larger set of data, with more details than the MDS, which includes questions on patient demographics, diagnosis, symptoms, treatment and burden of disease. The EDS can be used by hemophilia treatment centers to collect data on patients participating in the WBDR. The WBDR Extended Data Set (EDS), was added to the database in March 2019.

United States - Columbus, Ohio

Year of IHTC designation: 2018

Nationwide Children’s Hospital

Areas of Specialty

Dental care
Laboratory diagnosis
Nursing
Orthopedic care and surgery
Pediatric hematology services
Physiotherapy/occupational therapy
Psychology/social services

United States - Houston, Texas

Year of IHTC designation: 2000

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

Areas of Specialty

Adult and pediatric hematology
Laboratory diagnosis and hemostasis
Nursing
Blood banking
Physiotherapy/ Occupational therapy
Psychology/Social services

United States - Los Angeles, California

Year of IHTC designation: 1970

Lifespan Orthopaedic Hemophilia Treatment Center at Luskin Orthopedic Institute for Children

Areas of Specialty

Adult and pediatric hematology
Laboratory diagnosis and hemostasis
Nursing
Orthopedic care and surgery
Physiotherapy
Psychology/Social services

United States - New York, New York

Year of IHTC designation: 1993

Mount Sinai School of Medicine
Mount Sinai Medical Center

Areas of Specialty

Adult and pediatric hematology
Laboratory diagnosis and hemostasis
Nursing
Orthopedic care and surgery
Molecular genetics
Social services

United States - Rochester, Minnesota

Year of IHTC designation: 1974

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

Areas of Specialty

Adult and pediatric hematology
Blood banking
Laboratory diagnosis and hemostasis
Molecular genetics
Nursing
Orthopedic care and surgery
Physiotherapy
Psychology/ Social services

United States - San Diego, California

Year of IHTC designation: 2018

Hemophilia & Thrombosis Treatment Center
University of California San Diego

Areas of Specialty

Adult hematology
Physiotherapy/occupational therapy
Dental care
Orthopaedic care (no surgery)
Laboratory diagnosis
Nursing
Psychology/social services

United Kingdom - London

Year of IHTC designation: 1970

Katharine Dormandy Haemophilia Centre and Thrombosis Unit
Royal Free Hospital

Areas of Specialty

Adult hematology
Laboratory diagnosis and hemostasis
Nursing
Orthopedic care and surgery
Physiotherapy/Occupational therapy
Molecular genetics
Psychology/Social services

United Kingdom - Oxford

Year of IHTC designation: 1972

Oxford Haemophilia and Thrombosis Centre
Churchill Hospital

Areas of Specialty

Adult and pediatric hematology
Laboratory diagnosis and hemostasis
Orthopedic care and surgery
Nursing
Molecular genetics
Physiotherapy/Occupational therapy
Psychology and social services

United Kingdom - Sheffield

Year of IHTC designation: 1992

Sheffield Haemophilia and Thrombosis Centre
Royal Hallamshire Hospital

Areas of Specialty

Adult hematology
Laboratory diagnosis and hemostasis
Molecular genetics

Our history

The WFH was established in 1963 by Frank Schnabel, a Canadian businessman born with severe hemophilia A. He believed that patient organizations could be much more effective—and do more to represent the interests of people living with bleeding disorders—if they worked together. The first WFH Congress was held in Copenhagen, Denmark, on June 25, 1963, and was attended by representatives from 12 countries. Now, the WFH and our global network of national member organizations (NMOs) represent the interests of people with hemophilia and other inherited bleeding disorders in 152 nations.

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SCOPE

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DEFINITION OF "PERSONAL INFORMATION"

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RESPONSIBILITIES OF WFH

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WHY WE COLLECT PERSONAL INFORMATION

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SHARING PERSONAL INFORMATION OUTSIDE QUÉBEC

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WITHDRAWING YOUR CONSENT

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CHANGES TO OUR PRIVACY POLICY

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CONTACT DETAILS FOR THE PRIVACY OFFICER

APPENDIX A

APPENDIX A

Terms and Conditions of use of WFH Digital Platforms

Advocacy

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Pact goals

Program components

OBJECTIVE

DURATION

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Introducing our 2023 Impact Report!

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WFH GTRT PROGRAMS

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Hemophilia Alliance

India - Mumbai

Year of IHTC designation: 2000

Areas of Specialty

India - Vellore

Year of IHTC designation: 2000

Areas of Specialty