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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

1.1 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.

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.

9.	RESPONSES TO JOB OFFERS
9.1	If you have applied for a job with WFH, we will use your personal information for recruitment and other human resources purposes. We keep the documents sent (CV, cover letter, etc.) by the candidates for a maximum of three (3) years. Documents are then securely destroyed.

10.	PROTECTION OF THE PRIVACY OF MINORS
10.1	WFH does not knowingly collect personal information from children under the age of 14 without the consent of the child's parent or legal guardian. If we learn that we have collected or received personal information from a child for whom parental confirmation was required, we will delete that information. If you believe that we may have received information from or about a child for whom we should have obtained parental consent, please contact us.

11.	DO WE DISCLOSE YOUR PERSONAL INFORMATION TO THIRD PARTIES?
11.1	Rest assured that WFH will never sell, trade, rent, share or transfer your personal information to third parties (organizations or individuals) for commercial purposes without your consent, except in the exceptional cases specifically provided for in this Policy.
11.2	As part of the services offered by our external suppliers. WFH may transfer personal information that we collect or that you provide as described in this Policy to service providers and other third parties we use to support our organization. Such third parties are contractually obligated to keep personal information confidential, use it only for the purposes for which we disclose it and process personal information in accordance with the standards set out in this Policy and in compliance with the Acts.
11.3	In the context of a legal obligation. WFH may disclose your personal information to comply with any court order, law or legal process, including to respond to any government or regulatory request, in accordance with applicable law, to combat fraud or harms to WFH or our members, or if we believe that disclosure is necessary or appropriate to protect the rights, property or safety of WFH or others.

12.	SHARING PERSONAL INFORMATION OUTSIDE QUÉBEC
12.1	Your personal information is processed and stored in Québec. In order to carry out our mission, we may in some cases store, process and transfer your information around the world, including outside Québec or to jurisdictions outside your country of residence — if you are located in the Economic European Area or Switzerland, please review Appendix A "Additional terms" which apply to you in addition to the main terms of this Policy. Data may also be stored locally on the devices you use to access WFH Websites and/or Platforms.
12.2	In such cases, the transfer will only take place if we find that the information would be adequately protected, in particular considering the sensitivity of the information, the purpose for which it is used, the protection the information would be afforded, and the legal framework applicable in the state or province where the information would be transferred. Any transfer will also be subject to appropriate contractual agreements to ensure adequate protection.

13.	HOW DO WE PROTECT YOUR PERSONAL INFORMATION?
13.1	The security of your personal information is very important to us. The personal information we collect is stored in a secure environment using industry-recognized technologies. We will protect personal information against loss or theft, unauthorized access, use or disclosure, copying, modification or destruction.
13.2	When you visit our Websites and/or Platforms and are asked for personal information, this information is used exclusively by WFH. In order to protect your personal information, we have implemented customary security measures that are appropriate to the sensitivity of the information collected, including the following physical, organizational, contractual and technological measures: Information stored in a protected database; Encrypted communications using the TLS protocol; Access to your personal information is restricted to those employees who need it to perform their duties (authorized and/or concerned persons) — these employees will treat the information as strictly confidential and will not give access to this information to any unauthorized person; Report any violation of this Policy or the Acts to the WFH Privacy Officer; Network monitoring software; Anti-virus and anti-malware; End-user device encryptions; Passwords and multi-factor authentication; Firewall; Secure Web site donation page; content encrypted or encoded to make information unreadable; Paper files kept in locked filing cabinets wherever possible; Access codes to WFH premises; Security personnel.
13.3	Individuals working for WFH or acting on our behalf must make reasonable efforts to minimize the risk of unintentional disclosure of personal information. In addition, our policies, procedures and codes of conduct are clearly communicated to our employees, contractors, volunteers, consultants and subcontractors and WFH will ensure that they are adhered to and respected. All individuals who fail to comply with the principles and procedures of this Policy will be subject to corrective measures, including termination of their employment relationship, tenure or contract.
13.4	Despite these precautions, no method of transmission or storage is 100% secure or error-free. As a result, we cannot guarantee absolute security. If you have reason to believe that your interaction with us is no longer secure, please contact us immediately.
13.5	If we become aware of a security breach involving your personal information, we will notify you and the appropriate authorities as soon as possible, in accordance with the Acts.

14.	RETENTION AND DESTRUCTION OF PERSONAL INFORMATION
14.1	Except as permitted or required by the Acts or any applicable law or regulation, WFH will retain your personal information only for as long as necessary to fulfill the purposes for which we collected it, including for the purposes of satisfying legal, accounting or reporting requirements to the appropriate government and regulatory bodies.
14.2	Personal information that is no longer required for the purposes for which it was collected will be destroyed, erased or made anonymous in accordance with applicable laws.
14.3	Under some circumstances, we may anonymize your personal information so that it can no longer be associated with you. We reserve the right to use de-identified and anonymized data for any legitimate purpose without further notice to you or your consent.
14.4	If the WFH uses personal information to make a decision that directly affects an individual, we will retain that information for as long as necessary to fulfill the purposes for which the information was collected. Once the information has been used, individuals may access their personal information as set out in the Acts.

15.	ACCESSING, CORRECTING, DE-INDEXING AND PORTABILITY OF YOUR PERSONAL INFORMATION
15.1	It is important that the personal information we hold about you is accurate and current. Please keep us informed if your personal information changes. You can contact us via the WFH Online Contact Form or email us at [email protected].
15.2	Upon request, an individual is entitled to be informed of the existence, use and disclosure of their personal information and to obtain access to that information, or to obtain a copy of their personal information in electronic or non-electronic format subject to appropriate notice. An individual has the right to challenge the accuracy and completeness of their personal information, have it amended, or withdraw consent to the use of their information. In addition, WFH complies with all laws regarding access to and correction of your personal information.
15.3	An individual has also the right to receive computerized personal information collected from them in a structured, machine-readable, and commonly used format. In certain circumstances, the individual may also ask WFH to transfer their computerized personal information directly to third parties. An individual has the right to request that the dissemination of their personal information cease, or to request that any hyperlinks associated with their name and that provide access to personal information be de-indexed or re-indexed.
15.4	No request for access, rectification, de-indexation or data portability may be considered unless it is made in writing and addressed to the WFH Privacy Officer. You must provide enough detail to enable the WFH to process the request. The Privacy Officer will respond within 30 days of the receipt of a request, unless it extends the time as authorized under the Acts.

16.	WITHDRAWING YOUR CONSENT
16.1	If you have given your consent to the collection, use and transfer of your personal information, you may have the legal right to withdraw your consent under certain circumstances. To withdraw your consent, if applicable, contact us at [email protected].
16.2	Please note that if you withdraw your consent, we may not be able to provide you with certain services. We will explain the impact of withdrawing your consent to help you make a decision.

17.	CHANGES TO OUR PRIVACY POLICY
17.1	WFH will review and update its policies and procedures as required to keep current with rules and regulations, new technologies and standards. Our Privacy Policy may therefore change from time to time. We will post any Policy changes on our Websites and Platforms and, if the changes are significant, we will provide a more prominent notice. You are responsible for periodically visiting our Websites and/or Platforms and this Policy to check for any changes.
17.2	Please note that both the English and French versions of our Privacy Policy have equal legal value.

18.	CONTACT DETAILS FOR THE PRIVACY OFFICER
If you have any comments, questions or requests regarding this Policy or our privacy practices, or to report any abuse by third parties, please do not hesitate to contact Antonio José Almeida, WFH Senior Director, Operations and Privacy Officer by e-mail at [email protected] or at the following postal address:
c/o Privacy Officer, World Federation of Hemophilia 1425, boul. René Levesque West Suite 1200 Montreal, Québec H3G 1T7 Canada
We have procedures in place to receive and respond to complaints or inquiries about our handling of personal information, our compliance with this Policy and applicable privacy laws. If you are not satisfied with WFH's handling of your personal information, you may file a complaint with WFH. The complaint will be investigated by the WFH Privacy Officer, who will determine whether the handling of the information complies with WFH policies and practices and any other applicable laws. The Privacy Officer will make every reasonable effort to resolve complaints. The person filing the complaint will be informed of any progress or outcome of the investigation within a maximum of 30 working days of receipt of the request and/or any additional time required to complete the investigation.

APPENDIX A
ADDITIONAL TERMS FOR USERS LOCATED IN THE ECONOMIC EUROPEAN AREA (EEA) AND SWITZERLAND
If you are located in the European Economic Area (EEA) or Switzerland, these additional terms apply to you in addition to the main terms of WFH Privacy Policy. In case of a contradiction between the Privacy Policy and these additional terms, the latter will prevail.
1	LEGAL BASIS FOR PROCESSING PERSONAL INFORMATION UNDER THE GENERAL DATA PROTECTION REGULATION (GDPR)
1.1	If you are from the European Economic Area (EEA) or Switzerland, WFH’s legal basis for collecting and using the personal information described in this Privacy Policy depends on the personal information we collect and the specific context in which we collect it. We only process your Personal information if we have a legal basis to do so, which includes: Consent: where you have given us your consent, you have given us permission to do so, or where processing is necessary for the performance of a service you have requested; or Legitimate interests: for example, we may process your personal information to protect you, us, or others from threats (such as security threats or fraud), to comply with laws that apply to us.
If you have any questions about the lawful bases upon which we collect and use your personal data, please contact: Antonio José Almeida, WFH Senior Director, Operations and Privacy Officer by e-mail at [email protected] or at the following postal address: c/o Privacy Officer, World Federation of Hemophilia, 1425, boul. René Levesque, West Suite 1200, Montreal, Québec, H3G 1T7, Canada
2	TRANSFER OF YOUR PERSONAL INFORMATION OUTSIDE OF THE EEA OR SWITZERLAND
2.1	We may process information outside of the EEA or Switzerland, including Canada and the USA.
3	ADDITIONAL RIGHTS REGARDING YOUR PERSONAL INFORMATION UNDER THE GENERAL DATA PROTECTION REGULATION (GDPR)
3.1	If you are a resident of the European Economic Area (EEA) or Switzerland, you have certain data protection rights. WFH aims to take reasonable steps to allow you to correct, amend, delete or limit the use of your personal information.
3.2	If you wish to be informed about what personal information we hold about you and if you want it to be removed from our systems, please contact us.
3.3	In addition to the rights mentioned in the section 15 ("Accessing, correcting, de-indexing and portability of your personal information") and in section 16 ("Withdrawing your consent"), in certain circumstances, you also have the following data protection right: The right to delete the information we have on you. Whenever made possible, you can request deletion of your personal information, in which case we will carry out this request unless certain exceptional reasons arise permitting us to keep certain information about you; The right to object. You have the right to object to our processing of your personal information in certain circumstances, such as those described in the “Legitimate interests” section 1.1 b) above. We may however continue to process your personal Information unless your interests, rights and freedoms override our legitimate interests; and The right of restriction. You have the right to request that we restrict or limit the ways in which we process your personal information for instance where you believe your data is inaccurate. Please note that we may ask you to verify your identity before responding to such requests.

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

By using these websites and/or Platforms, you agree to its terms and conditions, effective as of the date you first use these websites and/or Platforms.
The World Federation of Hemophilia reserves the right to change these terms and conditions at any time by posting a modification notice online. Continued use of these websites and/or Platforms following the posting of changes constitutes your acceptance of these terms, as modified.
You agree to use these websites and/or Platforms only for lawful purposes and in a manner that does not infringe the rights of third parties or restrict or impede their enjoyment of use of this site.
These websites and/or Platforms and the information contained therein, names, images, photographs, and logos concerning or making reference to the World Federation of Hemophilia are provided “as is” without any additional representation or condition and without any implicit or explicit guarantee of any sort. Under no circumstance will the World Federation of Hemophilia be responsible for any damages, including, but not limited to, indirect damages, or any other damages caused by the use of or related to the loss of use of the websites and/or Platforms, whether by contract or negligence.
The World Federation of Hemophilia does not guarantee the site’s operations will not be interrupted and/or are exempt from error, or shortcomings will be corrected.
The World Federation of Hemophilia does not guarantee that the websites and/or Platforms or server will be free of viruses or bugs, or even its full functionality or the precision and exactness of its content.
Copyright restrictions:
- All information, photographs, graphics, and other material on these websites and/or Platforms are protected by copyright. While users of these websites and/or Platforms may use the content for personal, non-commercial use, none of the content of these websites and/or Platforms can be modified, translated, transferred or sold, copied, reproduced, published, or distributed, in whole or in part, without the prior written consent of the WFH.
- Notwithstanding the above, certain documents and photos have been published on these websites and/or Platforms with the consent of the said copyright owners (who are not the World Federation of Hemophilia). All rights to these documents and/or photos are reserved and may not be reproduced without the consent of the copyright owners.
- The WFH encourages the dissemination of its information and welcomes proposals on the reprinting, redistribution, and translation of its materials. If you would like to publish information that you find on our websites and/or Platforms, please send your request to [email protected].
- The logo of the World Federation of Hemophilia and its explicitly associated graphic image elements may not be reproduced for commercial or promotional purposes without formal authorization from World Federation of Hemophilia.
If you have any questions about the practices of our websites and/or Platforms or suggestions on how to make these websites and/or Platforms more accessible, please contact us at [email protected].
The World Federation of Hemophilia is not responsible for the content of external websites to which its site may link. Throughout our websites and/or Platforms, we provide links to other servers which may contain information of interest to our readers. We assume no responsibility for, and exercise no control over, the organizations, views or accuracy of information contained on other servers. When linking to the WFH, we request that you ensure that there are no associated connections for commercial purposes. If you have a link you’d like us to consider adding to our website, please send an email to [email protected] with the subject “Link request”.
Any communication or material that is publicly transmitted or posted on these other servers, including any data, questions, suggestions, comments or other information, will be treated as non-confidential and non-proprietary information.
The World Federation of Hemophilia respects the privacy of its members and visitors to these websites and/or Platforms. In this regard, please refer to our Digital Platforms Privacy Policy.
In the event of any conflict between the terms and conditions of use herein and any specific guidelines or terms of use appearing on these websites and/or Platforms relating to specific material, the latter shall prevail. If there is a conflict between the conditions and/or regulations of this site and those applying to a specific document that may be posted, the latter takes precedent.
These terms and conditions of use shall be governed by and construed in accordance with the laws of Canada and Quebec. Any dispute shall be subject to the exclusive jurisdiction of the courts of Canada and Quebec. If the terms and conditions of use are not accepted in their entirety, use of these websites and/or Platforms must cease immediately.

Twinning Program

The WFH Twinning Program creates short-term collaborative partnerships between medical professionals and patient and youth leaders in emerging and established countries for a period of two to four years. Hemophilia treatment centres, patient organizations and youth groups can participate in this program, helping improve treatment and care for people living with an inherited bleeding disorder in developing countries.

Over more than 20 years, the WFH Twinning Program has established 265 partnerships across 119 countries: 97 hemophilia organizations, 162 hemophilia treatment centres and 5 youth group twinning partnerships.

Over the lifespan of the program, twinning partnerships have improved diagnosis and treatment, enriched the knowledge of HCPs caring for patients with bleeding disorders, enhanced outreach initiatives, facilitated resource sharing, increased government support for bleeding disorders through advocacy initiatives, and strengthened patient organizations through capability building.

TYPES OF TWINNING PARTNERSHIPS

Hemophilia Treatment Centre Twinning

The Hemophilia Treatment Centre (HTC) Twinning partners emerging HTCs with established ones for a maximum of four years to help improve diagnosis and provide care and treatment for people with hemophilia and other inherited bleeding disorders.

Hemophilia Organization Twinning

The Hemophilia Organization Twinning (HOT) partners emerging and established hemophilia patient organizations for a maximum of four years to share knowledge and skills in areas such as patient education, outreach, fundraising, and the other aspects of operating a successful hemophilia patient organization.

Youth Group Twinning

The Youth Group Twinning partners NMO youth groups from around the world in formal, two-year partnerships with the goal of helping to improve and strengthen youth leadership in emerging countries to prepare the next generation of leaders.

APPLICATION AND WFH SUPPORT

Applying to the WFH Twinning Program

Contact the WFH at [email protected] to request a background questionnaire to be completed
If a potential partner is identified, the WFH will contact you to discuss the possibility of a twinning
Once twins have been matched, an assessment visit will be conducted
- This is an opportunity for the potential partners to meet with each other, learn more about the current situation in the developing country, and discuss the ways a twinning partnership could help improve care in that country
- At the end of the assessment visit, if partners agree to proceed, a formal online application form will be completed and submitted for the consideration of the Twinning Committee

WFH Support

The WFH provides support to twinning partners (treatment centres, organizations, and youth groups) during the lifespan of their partnership by:

Assisting interested applicants in finding a twinning partner
Financially supporting the partnerships through annual project funding and funds for assessment visits
Providing individual guidance and coaching to twinning partnerships through WFH regional managers
Facilitating the sharing of experiences between twinning partnerships, including twinning meetings
Supplying WFH educational resources
Providing a letter of support to facilitate travel

For more information on the WFH Twinning Program, contact the WFH at [email protected].

LATEST TWINNING NEWS

WFH 2022 Twins of the Year announced

The World Federation of Hemophilia 2022 Twins of the Year have been announced! The Hemophilia Organization Twinning (HOT) Program Twins of the Year are the Serbian Hemophilia Society and the Canadian Hemophilia Society (Manitoba Chapter). The Hemophilia Treatment Centre Twinning (HTC) Program Twins of the Year are Al Bashir Hospital in Amman, Jordan and the two HTCs in Ireland: the National Coagulation Centre, St. James’s Hospital, and the Children’s Health Ireland at Crumlin in Dublin, Ireland.

Read Story >

WFH 2021 Twins of the Year announced

The WFH is happy to announce the 2021 Twins of the Year! The 2021 Hemophilia Organization Twinning (HOT) Program Twins of the Year are Palestine-Venezuela, and the 2021 Hemophilia Treatment Centre Twinning (HTC) Program Twins of the Year award is shared by Addis Ababa (Ethiopia)-Minneapolis (U.S.A) and Tehran (Iran)-Milan (Italy).

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Don’t miss: WFH Twinning event to celebrate long lasting partnerships

The World Federation of Hemophilia (WFH) Twinning Program creates collaborative partnerships between hemophilia treatment centres (HTCs), patient organizations and their youth groups to help improve treatment and care for people living with an inherited bleeding disorder around the world.

Read Story >

The Twinning Program is supported by exclusive funding from:

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IEQAS improves and standardizes laboratory diagnosis by auditing the effectiveness of a laboratory’s internal quality assurance systems to determine competence levels.

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Upcoming events

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

Twins of the Year Awards

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

2021	Baolai Hua Yangzhou College, Xuzhou Medical University	The effects of intra-articular injection of TNF-alpha Antagonists in treatment of haemophilic synovitis
2019	Maarten Eerdekens Belgium	Association between multi-segment foot kinetics and blood induced joint damage in adult patients with hemophilic ankle arthropathy
2017	Fabio Souza Brazil	Decrease in joint inflammation, swelling and pain after a swimming protocol in animal model of experimental-induced hemarthrosis
2015	SM Javd Mortazavi Iran	Bilateral total knee arthroplasty in patients with hemophilia: A safe and cost-effective procedure
2013	Lize F.D. van Vulpen United States	A fusion protein of IL4 and IL10, is equally effective in protecting cartilage from blood-induced damage compared to the individual components
2012	Horacio Caviglia Argentina	Pseudotumor Surgery in Haemophilia A patients: Comparitive results between inhibitor and non-inhibitor patients
2011	Nick Goddard United Kingdom and Monique van Meegeren The Netherlands	Early onset administration of IL-4 and IL-10 prevents blood-induced cartilage damage in vitro
2010	Lydia Abad-Franch Spain	Influence of an Aquatic Training Protocol on the Reduced Risk of Cardiovascular Morbidity and Mortality in a Hemophiliac
2009	Sebastien Lobet Belgium	Impact of Hemophilia Ankle Arthropathy on Gait Disability: Analysis of Energetic and Mechanical Variables
2008	Jose Alberto Tlacuilo-Parra Mexico	Bone Turnover Markers and Bone Mineral Density in Children with Hemophilia
2007	Natalie Jansen The Netherlands	Protective Abilities of Interleukin-10 in Blood-induced Cartilage Damage
2006	Axel Seuser and E. Kusch Germany	Multi-Center Study of Orthopedic Outcome of the Lower Extremities in 249 Children with Hemophilia
2005	Frank van Genderen, Nico van Meeteren, Lily Heijnen, Piet de Kleijn, Marijke van den Berg, Paul Helders The Netherlands	The Hemophilia Activities List: Final development and validation of a hemophilic-specific self-assessment questionnaire on functional abilities
2004	Goris Roosendaal, Zalima N Jahangier, Kim MG Jacobs, Johannes WJ Bijlsma, Floris PJG Lafeber The Netherlands	Radiosynoviorthesis using YTTRIUM-90 results in adverse direct effects on cartilage: a human in vitro study
2003	Axel Seuser, Thomas Wallny, Günter Schumpe, Elmar Trunz, Hans-Hermann Brackman Germany	How to advise young haemophiliacs to find the right sport? A new and safe algorithm
2002	James Luck, Jr. and Mauricio Silva United States	Long-Term Review of Total Knee Arthroplasty
2001	Federico Fernández-Palazzi Venezuela	Oxytetracycline Chlorohydrate: A new material for chemical synovial orthoses
2000	Horacio Caviglia Argentina	Pseudotumours
1999	William J. Ribbans and J.L. Hicks United Kingdom	Communication and Co-operation for the New Millennium – The Future of the Musculoskeletal Committee in the 21st Century
1998	Adolfo Llinas, Mauricio Silva, Monica Duarte, Gonzalo Ucros, Graciela Perini, Angela Maria Cerquera, Andres Forero Colombia	Chromic phosphate synoviorthesis without age restriction should be the first treatment option for chronic active hemophilic synovitis

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

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

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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Israel - Tel Hashomer

Year of IHTC designation: 1993

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Spain - Madrid

Year of IHTC designation: 2018

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Spain - Valencia

Year of IHTC designation: 1997

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Year of IHTC designation: 2002

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Year of IHTC designation: 2010