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 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
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.

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.
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PROGRAM

Posters

Networking opportunities

Simultaneous interpretation

Tracks

Satellite Symposia

Presentation Theatre

CME credits

Haemophilia supplements

Full program now available!

Full program

ORGANIZED BY:

HOSTED BY:

ORGANIZED BY
World Federation of Hemophilia

HOSTED BY
Hemophilia Society of Malaysia

SUPPORTED BY

Program

The WFH 2026 World Congress will include over 80 hours of continuing educational sessions across the Medical and People with Bleeding Disorders (PWBD) tracks, as well as six professional development tracks: Nursing, Dental, Laboratory Sciences, Psychosocial, Musculoskeletal (MSK) and Women and Girls with Bleeding Disorders (WGBD).

Participants can expect to be treated to a world-class program that will cover the very latest medical and multidisciplinary developments. It will feature world-class plenary and session speakers, interactive sessions, workshops, panel discussions and innovative industry symposia. And, of course, a rich social calendar will help participants get the most out of their time in Kuala Lumpur.

Join our mailing list and stay up to date on all WFH events.

Also available in: Français Español

WFH 2026 World Congress
[email protected]

ORGANIZED BY:
World Federation of Hemophilia

HOSTED BY:
Hemophilia Society of Malaysia

SUPPORTED BY:

Posters

Learn more about the 12 moderated poster sessions, and over 350+ posters that will be on display in Exhibition Hall 7 throughout the WFH 2026 World Congress.

NETWORKING OPPORTUNITIES

Simultaneous interpretation

Selected sessions at the WFH 2026 World Congress will offer AI-powered interpretation in 50+ languages, helping break language barriers and make global conversations more accessible to everyone.

TRACKS

The WFH 2026 World Congress will feature eight unique program tracks to help you develop the schedule of sessions and workshops that will be the most valuable to you.

Core tracks

Medical track

Featuring more than 50 experts from over 20 countries, the Medical Track will allow you to explore cutting-edge advances in diagnosis, treatment, and the long-term management of bleeding disorders. Sessions will span from large-scale genetic analyses and gene editing innovations to the real-world implementation of gene therapy. Experts will discuss emerging and rare disorders, evolving non-factor and mimetic therapies, and practical clinical challenges from neonatal bleeds to aging patients.

People with Bleeding Disorders (PWBD) track

The PWBD track will highlight the lived experience and evolving needs of people with bleeding disorders, offering a dynamic platform to share experiences, learn, and engage with emerging innovations in care. Covering topics such as access to treatment, digital health, mental health, family planning, aging, and wellness, these sessions will emphasize practical knowledge, shared insights, and patient-centred innovation to improve quality of life and empower the global bleeding disorders community.

Professional Development tracks

Dental track

The Dental track will highlight the unique dental care needs of people with bleeding disorders across their lifespans. Explore women’s and girls’ oral health, transitions from pediatric to adult care, aging, and rare disorders, with a hands-on workshop teaching preventive care, oral hygiene, and bleeding management for patients and caregivers.

Laboratory Sciences track

The Laboratory Sciences track will take you from the fundamentals of hemostasis testing to the latest in advanced diagnostics. Expert-led sessions will explore laboratory approaches to hemophilia, von Willebrand disease (VWD), and platelet disorders, combining classical knowledge with cutting-edge innovations such as gene therapy, novel therapeutics, and next-generation sequencing. This track will include three professional development workshops, including a new hands-on workshop offering practical experience with manual assays, quality control, and platelet and coagulation testing.

Musculoskeletal (MSK) track

The Musculoskeletal track will cover the full spectrum of joint health and function in people with bleeding disorders—from understanding joint pathology and surgical management to imaging, rehabilitation, and long-term care. Sessions will feature updates in diagnostics, pediatric and women’s MSK health, and global access to care. Three hands-on workshops on ultrasound, manual therapy, and strength training will offer practical skills alongside clinical insights.

Nurses track

The Nurses track will underscore the essential role of nurses in the care and treatment of people with bleeding disorders. Sessions will address comprehensive care, including musculoskeletal and oral health assessments, service development, rare bleeding disorders, women’s health, and the application of novel therapies. Take part in the professional development day to gain practical tools, engage in case discussions, and explore strategies to enhance nursing practice, leadership, and patient outcomes worldwide.

Psychosocial track

The Psychosocial track will examine the psychological, social, and cultural dimensions of living with bleeding disorders. Sessions will cover mental health, community and peer support, identity across life stages, caregiver wellbeing, and the psychosocial implications of novel therapies such as gene therapy. Join the Psychosocial Day workshop for hands-on skill building, practical toolkits, and regional networking to learn more about strengthening care worldwide.

Women and Girls with Bleeding Disorders (WGBD) track

The WGBD track will shine a light on an often underserved population, focusing on the unique challenges women and girls face with bleeding disorders. Sessions will cover menstrual health, delayed diagnosis, shared decision-making, bone health, and multidisciplinary care, offering practical tools, case discussions, and strategies to empower patients and improve outcomes across their lifespans.

SATELLITE SYMPOSIA

Explore our dynamic symposia schedule, offering a diverse array of engaging topics.

DAY 1

Monday, April 20

12:45 – 13:45

BALLROOM 1 | Roche

Stronger Together: Creating More Access to Advanced Prophylactic Treatment, Globally

Join an interactive discussion exploring the impact of advanced prophylaxis for people living with haemophilia A. Discover how strong patient communities, advocacy, and collaboration can unlock better access to advanced prophylaxis worldwide. Hear real-world insights and lessons learned from Pakistan and New Zealand—and be part of the conversation shaping a more equitable future in haemophilia care.

12:45 – 13:45

BANQUET HALL | Sanofi

Rebalancing Hemostasis: Advancing Hemophilia Care

17:30 – 18:30

BANQUET HALL | Octapharma

Beyond Replacement: Redefining Factor VIII and Inhibitor Care in Haemophilia A *

Join Alok Srivastava (IN), Anna Pavlova (DE), and Robert F. Sidonio Jr. (US) to explore current challenges and evolving strategies in haemophilia A management, with a focus on the role of Factor VIII in the modern treatment landscape. Expert faculty will discuss individualised treatment decisions, genetic risk factors for inhibitor development, and modern approaches to inhibitor eradication.

* This session is for healthcare professionals only.

DAY 2

Tuesday, April 21

12:15 – 13:15

BANQUET HALL | Pfizer

Together for Tomorrow: Advancing Global Hemophilia Care Through Partnership

This symposium will explore the evolving landscape of hemophilia care. Drawing on global insights and experience from the WFH Twinning Program, faculty will examine regional unmet needs and the impact of global collaboration in advancing equitable, patient-centered care worldwide.

The World Federation of Hemophilia does not endorse particular treatment products or manufacturers; any reference to a product name is not an endorsement by the WFH. The WFH is not a regulatory agency and cannot make recommendations relating to safety of manufacturing of specific treatment products. Some sessions may be accessible to healthcare professionals only.

PRESENTATION THEATRE

Join us in MR304-305 for these presentation theatre sessions:

DAY 1 | April 20

DAY 2 | April 21

10:55
to
11:25

MR304-305

Takeda

Bleed Management in Patients with Inhibitors in the Evolving Treatment Landscape *

11:00
to
11:30

MR304-305

CSL

Shared decision-making for patient-focused haemophilia B management

* This session is for healthcare professionals only.

CME CREDITS

The WFH 2026 World Congress has been reviewed and approved for CME-CPD accreditation by the European Board for Accreditation in Hematology (EBAH). The EBAH has approved this educational activity for a maximum number of 24.5 CME-CPD credits. Each participant should only collect credits for time that she/he actually spent in the educational activity.

Breakdown of EBAH CME credits

1 hour of CME-CPD activity = 1 EBAH CME-CPD credit point

Maximum per day

April 19: 7.5 credits
April 20: 5.75 credits
April 21: 6 credits
April 22: 5.5 credits

Participants will be asked to complete a questionnaire for each day they are claiming credits, in order to confirm their participation in our scientific program.

How to claim your EBAH CME credits

Participants have until May 7, 2026 EST to create an EBAH account and complete the daily questionnaires in order to obtain CME credits. Participants will be able to print their EBAH-CME certificate via the EBAH-CME system after May 31, 2026.

Daily questionnaires

You will be required to complete a questionnaire for each day you wish to claim credits.

Click here to access the questionnaires.

Participants should only claim credits for the time they actually attended the World Congress.

EBAH account

To find your EBAH-CME number, log in to your EBAH account (login) or create an EBAH CME account if you do not already have one (create account).

Creating an EBAH CME account or logging in is simple and free.
Please add your EBAH CME account number in the daily questionnaires

Within the EBAH-CME system, you will be able to:

Print your EBAH-CME certificates.
Review and manage your personal account.
Search for accredited events based on the European Hematology Curriculum.

For further assistance with your EBAH account please contact:

EBAH Office
Koninginnegracht 12b, 2514 AA – The Hague, The Netherlands
Phone: +31 (0)70 3020 099
Email: [email protected]

HAEMOPHILIA SUPPLEMENTS

WFH 2026 State of the Art Book

This peer reviewed supplement reflects the best clinical practice advice and expert opinion within the various subspecialties of bleeding disorders and related fields that will be presented in the scientific program of the WFH 2026 World Congress.

WFH 2026 Book of Abstracts

Plan your calendar for free paper sessions, moderated poster presentations, and a comprehensive poster gallery, all showcasing the research and work presented on the abstracts of the WFH 2026 World Congress.

Poster networking event

When: Monday, April 22 – 19:30-20:30
Where: Poster gallery within the exhibit hall

Learn more about the work and research showcased in our poster gallery, from the authors themselves! Join us for an evening of sharing information, fostering connections, sparking conversations, and inspiring collaboration within the bleeding disorders community.

The WFH 2024 World Congress will include over 90 hours of continuing educational sessions across Medical and People with Bleeding Disorders (PWBD) tracks, and six professional development tracks: Nurses, Dental, Laboratory Sciences, Psychosocial, Musculoskeletal (MSK) and Women and Girls with Bleeding Disorders (WGBD). The World Congress will feature world-class plenary and session speakers, interactive sessions, workshops, panel discussions and innovative industry symposia.

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

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)

2022	Serbia – Manitoba (Canada)
2021	Palestine – Venezuela
2020	NHF (USA) – HFI (India)
2019	Madagascar – Brittany (France)
2018	Kenya – Scotland
2017	Mongolia – Manitoba (Canada)
2016	Tanzania – Ontario (Canada)
2015	Bangladesh – Canada
2014	Nicaragua – Quebec (Canada)
2013	Mauritius – South Africa
2012	Vietnam – Ireland
2011	Cambodia – New Zealand
2010	Tunisia – Quebec (Canada)
2009	Peru – Galicia (Spain)
2008	South Africa – Canada
2007	Honduras – Georgia (USA)
2006	Bosnia and Herzegovina – Ireland
2005	Pakistan – Malaysia
2004	Dominican Republic – Venezuela
2003	Jordan – Toronto (Canada)
2002	Nicaragua – Venezuela
2001	Philippines – Victoria (Australia)
2000	Georgia – Minnesota (USA) Uruguay – Argentina
1999	Nepal – Sweden Mexico – Texas (USA)
1998	Latvia – Germany
1997	India – Denmark
1995	Israel – Slovakia

2025	Greig Blamey Canada
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

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

WFH Digital Platforms Privacy Policy

INTRODUCTION

1.

PURPOSE

2.

SCOPE

3.

DEFINITION OF "PERSONAL INFORMATION"

4.

RESPONSIBILITIES OF WFH

5.

HOW DO WE COLLECT YOUR CONSENT?

6.

WHY WE COLLECT PERSONAL INFORMATION

7.

WHAT PERSONAL INFORMATION DO WE COLLECT?

8.

USE OF COOKIES

9.

RESPONSES TO JOB OFFERS

10.

PROTECTION OF THE PRIVACY OF MINORS

11.

DO WE DISCLOSE YOUR PERSONAL INFORMATION TO THIRD PARTIES?

12.

SHARING PERSONAL INFORMATION OUTSIDE QUÉBEC

13.

HOW DO WE PROTECT YOUR PERSONAL INFORMATION?

14.

RETENTION AND DESTRUCTION OF PERSONAL INFORMATION

15.

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

16.

WITHDRAWING YOUR CONSENT

17.

CHANGES TO OUR PRIVACY POLICY

18.

CONTACT DETAILS FOR THE PRIVACY OFFICER

APPENDIX A

APPENDIX A

Terms and Conditions of use of WFH Digital Platforms

Full program now available!

Program

Posters

NETWORKING OPPORTUNITIES

Opening ceremony & Welcome reception

Poster networking event

Simultaneous interpretation

TRACKS

Core tracks

Medical track

People with Bleeding Disorders (PWBD) track

Professional Development tracks

Dental track

Laboratory Sciences track

Musculoskeletal (MSK) track

Nurses track

Psychosocial track

Women and Girls with Bleeding Disorders (WGBD) track

SATELLITE SYMPOSIA

PRESENTATION THEATRE

CME CREDITS

Maximum per day

Daily questionnaires

EBAH account

Within the EBAH-CME system, you will be able to:

HAEMOPHILIA SUPPLEMENTS

WFH 2026 State of the Art Book

WFH 2026 Book of Abstracts

Poster networking event

Disclaimer

Fraud Alert

Unauthorized solicitations – Warning

Hemophilia Alliance

Hemophilia of Georgia

National Bleeding Disorders Foundation

Legacy Gift

Disclaimer

Website privacy policy

Use of links