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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

1.2 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 1184 rue Sainte-Catherine Ouest Suite 500 Montreal, Québec H3B 1K1 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, 1184 rue Sainte-Catherine Ouest Suite 500, Montreal, Québec, H3B 1K1, 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.

WFH AWARDS

WFH Volunteer Awards

WFH Program and Research Awards

WFH Partner Awards

WFH Awards

The World Federation of Hemophilia (WFH) and its national member organizations (NMO) are powered by dedicated individuals who believe that together, a certain future can be brought to those living with a bleeding disorder around the world.

WFH VOLUNTEER AWARDS

The WFH Volunteer Awards were created to recognize the outstanding leadership provided by our volunteers who help further our vision of Treatment for All.

Nominations are now being accepted for the International Frank Schnabel Volunteer Award, the International Healthcare Volunteer Award, and the President’s Award.

For more information, please contact [email protected].

Call for nominations now open!

Do you know someone who has made an outstanding contribution to the local or global bleeding disorders community? If so, let your voice be heard: the WFH is now accepting nominations for the 2026 WFH Volunteer Awards. The deadline to submit a nomination is November 30th, 2025.

Winners will be announced during the WFH 2026 World Congress in Kuala Lumpur, Malaysia.

WFH 2024 World Congress awards

During the WFH 2024 World Congress, six WFH awards were bestowed—to individuals and one organization—recognizing their contributions to the global inherited bleeding disorders community.

Read the article to learn more about the winners.

International Frank Schnabel Volunteer Award

The International Frank Schnabel Award was established in 2004, named in honour of WFH founder Frank Schnabel. It is given to an individual with hemophilia, an inherited bleeding disorder, or to a family member, who has contributed significantly in furthering the mission and goals of the WFH.

The award is given every two years at the WFH World Congress.

We invite you to nominate an individual with hemophilia or another inherited bleeding disorder, or a family member who has contributed significantly in furthering the mission and goals of the WFH. Nominees must meet the criteria below in order to be considered.

Criteria:

A minimum of eight (8) years’ involvement in the work of WFH as a volunteer. Having impacted through leadership, actions, and behavior, not only the individual’s country of origin but also the region, other regions or having a global impact
Involvement in one or several areas such as WFH committees and programs on blood safety, communications, healthcare development, fundraising, congress, or WFH national member organizations

Not Eligible:

Current WFH Board of Directors, individuals running for the 2026 board elections and WFH Staff are not eligible for nomination
Current members of the Medical Advisory Board (MAB)

WFH International Healthcare Volunteer Award

Established in 2004, this award honours a healthcare professional who has contributed significantly to furthering the mission and goals of the WFH in a volunteer role. Candidates for this award include doctors, nurses, physiotherapists, psychologists, social workers, dentists, and other health professionals, who provide care and treatment to people with inherited bleeding disorders.

The award is given every two years at the WFH World Congress.

We invite you to nominate a healthcare professional who has contributed significantly in furthering the mission and goals of the WFH. Nominees must meet the criteria below in order to be considered.

Criteria:

A number of years’ involvement in the work of WFH
Involvement in one or several areas such as WFH committees and programs on blood safety, communications, healthcare development, fundraising, congress, or WFH national member organizations
Nominations for this award are for an individual’s volunteer role with WFH and not for their professional role as healthcare provider or researcher

Not Eligible:

Current WFH Board of Directors, individuals running for the 2026 board elections and WFH Staff are not eligible for nomination.
Members of the Medical Advisory Board (MAB)

WFH President's Award

Established in 2018, the WFH President’s Award recognizes an individual or organization that has served their local community and made a substantial impact in the bleeding disorders community within their country. The award is given every two years at the WFH World Congress.

We invite you to nominate an individual (over 18) / organization, with a minimum of five years of active leadership in their local bleeding disorders community, who has made an impact nationwide and contributed significantly to advancing the mission and goals of the WFH.

Beginning in 2024, a new sub-category has been added to the President’s Award to recognize individuals and organizations working to increase recognition, visibility, and improve diagnosis and/or access to care for women and girls with bleeding disorders (WGBD).

Nominations for the President’s Award may be submitted for any of the following categories. Up to three awards will be presented:

Individual or Organizations such as an NMO leader, chapter leader, youth leader, local lay individual and/or leader of any other group, serving their local bleeding disorders community and/or country.
Healthcare Professional making an impact in their local bleeding disorders community and/or country.
Advocate for Women and Girls with Bleeding Disorders: An individual / organization making an impact towards improving access to care and/or diagnosis for Women & Girls with bleeding disorders.

Nominees must meet the criteria below in order to be considered.

Criteria for Individual/Organizations or Healthcare Professionals

Demonstrate a minimum of five years of active leadership in the bleeding disorders community within their own country
Demonstrate a positive relationship with a WFH national member organization (NMO)
Development of a project/initiative that has resulted with making a nationwide impact in the bleeding disorder community due to their leadership
Winners will be selected from the finalists chosen from all the nominations received and could either be an NMO leader, chapter leader, youth leader, local lay or medical volunteer, and/or chapter/NMO/youth group, or other organization.

Not Eligible:

Volunteer leaders serving on international boards or WFH committees (such as the WFH and WFH USA Board of Directors and WFH Medical Advisory Board
Individuals/organizations not associated with a WFH NMO.
Individuals running for the 2026 board elections and WFH Staff are not eligible for nomination.

Presidents’ Award: Women and Girls with Bleeding Disorders Category

This category of the Presidents’ Award recognizes an individual or an organization who has demonstrated consistent dedication and service towards advancing the recognition, diagnosis, and equitable access to care of Women and Girls with Bleeding Disorders (WGBD). The individual or organization nominated should be an advocate for WGBD and have made significant impact in reshaping perceptions surrounding bleeding disorders among women and girls. Their efforts should have significantly increased the recognition and visibility of WGBD within the broader bleeding disorders community.

Criteria

Candidate is an individual or organization that has been involved in programs or initiatives with focus on improving the capacity of NMOs and HCPs to diagnose and provide specialized care to WGBD.
Candidate is an individual or organization that has been an avid advocate for WGBD and has made significant impact in changing the mindsets that women are solely carriers.
Candidate is an individual or organization that has shown dedication towards fostering collaboration between different stakeholders (NMOs, HCPs and government institutions as well as civil society) to achieve equitable access to diagnosis and care for WGBD.
Candidate is an individual or organization that has demonstrated commitment to raising awareness in their community about WGBD’s issues.

Not Eligible

Volunteer leaders serving on boards or WFH committees (such as the WFH and WFH USA Board of Directors and WFH Medical Advisory Board)
Individuals or organizations not associated with a WFH NMO
Individuals running for the 2026 board elections and WFH Staff are not eligible for nomination.

WFH International Lifetime Achievement Award

This Award was established in 2006 and is given to an individual in recognition of a body of work over a period of time. Recipients have contributed to furthering the mission and goals of the World Federation of Hemophilia in a particular region, country or professional area, throughout their career and for a significant part of their lives.

This Award is given, when merited, at the bi-annual World Congress or may be given, when appropriate, during formal meetings with WFH leadership.

WFH International Award for Outstanding Service

Established in 2010, this Award is given to an individual or an organization that has demonstrated outstanding service to the World Federation of Hemophilia (WFH) and to furthering the mission of the WFH. The recipient is a role model and will have demonstrated leadership, commitment, and active dedication to serving the bleeding disorders community. The recipient’s efforts have resulted in a measurable difference in the care of people with bleeding disorders.

This Award is given, when merited, at the bi-annual World Congress or may be given, when appropriate, during formal meetings with WFH leadership.

WFH PROGRAM AND RESEARCH AWARDS

Twins of the Year Awards

The Twins of the Year Awards are given out annually to hemophilia treatment centre twins, and hemophilia organization and youth group twins that best showcase the philosophy of the Twinning Program.

Criteria

Demonstrated high level of commitment to the partnership
Demonstrated teamwork on all endeavours
Achieved objectives that were set for the year
Exhibited excellent communication between partners

Sustained level of activity
Executed complex activities
Provided documentation in a complete and timely manner
Are not previous Twins of the Year Award winners

Selection

Selection is made by the Hemophilia Treatment Centre (HTC) Twinning and Hemophilia Organization Twinning (HOT) committees. The plaques are presented to the recipients during the WFH World Congress, which takes place every two years.

2023 Twins of the Year

HTC	HOT
Semarang (Indonesia) – Utrecht (Netherlands)	Rwanda – Pays de la Loire (France)

Pietrogrande Prize

The Pietrogrande Prize was created in 2005 to recognize a healthcare professional who has contributed significantly in furthering the mission and goals of the Musculoskeletal Committee of the WFH.

The prize honours Dr. Vincenzo Pietrogrande, a leading orthopedic surgeon and director of the Institute of Clinical Orthopedics at the University of Milan, Italy. Dr. Pietrogrande was the first chair of the group that eventually became the Musculoskeletal Committee.

The WFH presents the prize every two years at the WFH Musculoskeletal Congress.

Henri Horoszowski Award

This award was established in 1998 to honour the memory of Professor Henri Horoszowski, former chairperson of the Musculoskeletal Committee, to encourage musculoskeletal specialists to become involved in hemophilia care.

Presenters of any free papers selected for inclusion in each Musculoskeletal Congress and each musculoskeletal program of the WFH World Congress are eligible for the award, with two exceptions:

Current or past members of the Musculoskeletal Committee
Previous winners of the award

Criteria for the award include scientific methodology, originality, relevance, and quality of the presentation as determined by a panel of judges appointed by the Musculoskeletal Executive Committee.

For more information, contact Rohini Dange [email protected].

WFH PARTNER AWARDS

Christine Lee Young Researcher Award

Established in 2012 by the World Federation of Hemophilia (WFH) and Wiley, the Christine Lee Young Researcher Award (formerly the Christine Lee Haemophilia Journal Award) is given in recognition to a top young researcher (graduate student or postdoctoral fellow) who is the primary author and presenter of a highly rated submitted abstract in any discipline involving hemophilia or other related bleeding disorders.

The selection committee, including the Haemophilia Journal’s editors and WFH representatives on the Haemophilia Editorial Board, will choose the best presented abstract at the WFH World Congress.

A prize of $3,000 for the best free paper presentation and a prize of $1,000 for the best poster presentation, along with a three-year online personal subscription to Haemophilia is provided for both awards.

The young researcher must be under the age of 40 at the time the article is submitted. If there are multiple authors, the lead author and presenter must be under the age of 40 at the time the article is submitted.

The Arosenius Fund (Swedish Hemophilia Society)

With generous unrestricted grants from the pharmaceutical industry, the Swedish Hemophilia Society launched the Arosenius Fund in 1996 in the name of Ivar Arosenius, a famous Swedish artist who lived with a bleeding disorder.

The fund supports travel to conferences and workshops, allowing recipients to reach the national and international research community.

Did you know?

The WFH closely monitors product safety, supply, and access; issues advisories related to treatment safety and supply; and monitors the development and regulatory status of new and novel treatments.

Get the whole story

Upcoming events

December 2025
December 4

WFH Webinar: Highlights from the Third Edition of the Laboratory Manual 2025

Join us for our upcoming Lab Manual Webinar Series starting on Thursday, October 2, 2025, at 3:00 p.m. UTC. The webinars will be held in English with live Spanish interpretation. This three-part series will continue on November 6 and December 4, 2025, providing practical insights and discussions for laboratory professionals.
December 12 @ 9:00 am - 10:30 am

WFH Webinar: Comprehensive Pain Management in People with Bleeding Disorders (PWBD)

Join the WFH MSK Committee webinar “Comprehensive Pain Management in People with Bleeding Disorders (PWBD)” on December 12, 2025, from 9:00–10:30 a.m. (Montreal time). Experts will discuss the causes of pain in PWBD, pharmacological treatments, and the role of strength training in managing arthropathy. This session is designed for healthcare professionals seeking practical, multidisciplinary strategies to improve pain management and overall care for people with bleeding disorders.
April 2026
April 17, 2026

World Hemophilia Day 2026

On April 17, 2026, the global inherited bleeding disorders community will come together on World Hemophilia Day to advocate for all inherited bleeding disorders. This year’s theme of “Diagnosis: First step to care” highlights the critical importance of diagnosis—the essential first step in treatment and care.

Stay informed

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

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)

Henri Horoszowski Award

2025	Shubhranshu S. Mohanty India	Haemophilic pseudotumour – New improvised classification system and its outcome in 168 cases at a Tertiary care centre
2021	Baolai Hua China	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

2025	Ilenia Calcaterra Italy	Best oral presentation: Intensive FVIII replacement in haemophilia patients with hypertrophic synovium: a randomized study
2024	Geneviève McCluskey France	Best oral presentation: Fitusiran displays efficient pro-hemostatic activity in a mouse model of inducible factor X-deficiency
2024	Rodrigo Núñez Cortés Chile	Best poster presentation: Effects of resistance training on muscle strength in adults with haemophilia: a systematic review and meta-analysis
2023	Gabriela Yamaguti-Hayakawa Brazil	Best free paper presentation: Musculoskeletal Health After Gene Therapy For Hemophilia A: A Three-Year Follow-Up Longitudinal Study
2022	Merel A. Timmer Netherlands	Best free paper presentation: Feasibility and proof of concept of e-Exercise haemophilic arthropathy
2020	Dr. Ozlem Turan UK
2017	Dr. Heike Singer University Hospital Bonn Bonn, Germany	Best free paper presentation: Detection and localization of intracellular FVIII in IPS derived endothelial cells from three Hemophilia A (HA)-patients with null mutations
2017	Dr. Badle Saket Clinical Research Fellow Barts and the London School of Medicine and Dentistry The Royal London Hospital Haemophilia Centre London, United Kingdom	Best poster presentation: Pharmacokinetic intervention to optimise FVIII prophylaxis: UKPK trial interim analysis
2014	Laurens Nieuwenhuizen Netherlands (2014 recipient) Susanna Lovdahl Sweden (2013 recipient)

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

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