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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.
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.	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-Lévesque West Suite 1200 Montreal, Québec H3G 1T7 Canada
We have procedures in place to receive and respond to complaints or inquiries about our handling of personal information, our compliance with this Policy and applicable privacy laws. If you are not satisfied with WFH's handling of your personal information, you may file a complaint with WFH. The complaint will be investigated by the WFH Privacy Officer, who will determine whether the handling of the information complies with WFH policies and practices and any other applicable laws. The Privacy Officer will make every reasonable effort to resolve complaints. The person filing the complaint will be informed of any progress or outcome of the investigation within a maximum of 30 working days of receipt of the request and/or any additional time required to complete the investigation.

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

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

Juliana Hagembe

Juliana Hagembe is a skilled public health professional and health system strengthening specialist based in Kenya. Holding both a master’s degree in public health and biochemistry, she is dedicated to increasing access to diagnosis and treatment in low-resource settings. As an Outreach and Diagnostic Consultant for WFH, Juliana leverages over 10 years of experience in conceiving and implementing innovative, evidence-based solutions for underserved communities in limited-resource settings. Her expertise in public health and biochemistry enables her to drive improvements in healthcare services.

Donna Coffin

Donna Coffin, MSc is currently the Director, Research & Education at the World Federation of Hemophilia (WFH) in Montreal, Canada. Donna is an epidemiologist, trained at McGill University in Montreal, and has spent much of her career conducting evidence based research for health care and regulatory agencies around the world. Since joining the WFH in 2016, Donna has established the Research & Education department, with focus on the development and implementation of the World Bleeding Disorders Registry. Her team is also responsible for all WFH research activities, including the WFH Annual Global Survey, the WFH Clinical Research Grant Program, and the production of evidence-based advocacy tools used to promote treatment for all.

Erich Vinicius de Paula

Erich De Paula is an Associate Professor of Hematology at University of Campinas, in Campinas, SP, Brazil. His main interest in teaching, research and medical care are diseases involving thrombosis and hemostasis. He currently holds the position of medical consultant of the national program for hereditary bleeding disorders of the Ministry of Health in Brazil.

Flerida Hernandez

Physician Hemophilia Philippines (HAPLOS Community) Foundation, Inc. Manila, Philippines

Premroop Alva

Born with severe hemophilia B, Prem has been involved in Haemophilia movement in Karnataka and India for over 25 years. He has held various positions in his chapter and the national NMO. He was one of the architects of evidence-based advocacy initiatives in India and played a huge role in establishing the National Hemophilia Registry of Hemophilia Federation (India). Prem has been actively involved in advocating for improvement of treatment and diagnostic facilities in several states of India and led various development projects in HFI. He contributions have led to establishment of several comprehensive hemophilia care centres in the country. Prem is also a member of State Blood Cell, a government decision-making body on blood & bleeding disorders in the state of Karnataka, India.

Tahani Ali

Dr. Tahani ALI, Professor, M.D.: Hematology & blood transfusion, Faculty of medicine, Damascus University

Mark Skinner

Mark Skinner, Washington, DC, is President/CEO of the Institute for Policy Advancement Ltd, specializing in patient-centered outcomes research. He is an Assistant Professor in the Department of Health Research Methods, Evidence and Impact at McMaster. He has previously led both national and international patient organizations including the World Federation of Hemophilia and National Hemophilia Foundation where he currently serves on their Medical and Scientific Advisory Council. He is the principal investigator for the Patient Reported Outcomes Burdens and Experiences (PROBE) study, a global research project to enhance the direct patient voice in healthcare decision-making. He holds numerous roles as an advisor on critical blood safety and supply matters including having served on the US Health and Human Services Advisory Committee on Blood and Tissue Safety and Availability. He serves on the board of the Institute for Clinical and Economic Review (ICER), the National Organization for Rare Disorders (NORD) and formerly the Patient Centered Outcomes Research Institute (PCORI) Advisory Panel on Rare Disease, where he was an inaugural member. Previously, he was Vice President State Programs at the American Insurance Association and Administrative Assistant/Chief of Staff to the Speaker of the Kansas House of Representatives. He holds degrees in Public and Business Administration from Kansas State University and JD from Washburn University School of Law.

Glenn Pierce

Dr. Glenn Pierce currently serves on the WFH as VP Medical and WFH USA Board of Directors and NHF (US) Medical and Scientific Advisory Council. He is an Entrepreneur-in-residence at Third Rock Ventures, and a biotech consultant in the gene therapy and hematological areas.

Courtney Thornburg

Dr. Courtney Thornburg is the Director of the Hemophilia and Thrombosis Treatment Center at Rady Children’s Hospital San Diego and Professor of Pediatrics at the University of California-San Diego. Dr. Thornburg graduated from Duke University Medical School, completed her pediatric residency at Duke University Medical Center, and completed her pediatric hematology/oncology fellowship at the University of Michigan. While at the University of Michigan, she completed a Master Degree in Clinical Research Design and Statistical Analysis. During her time in Michigan she focused her training on hemophilia and other bleeding disorders and was a NHF-Shire Clinical Fellow under the mentorship of Dr. Steven Pipe. Dr. Thornburg was on the faculty at Duke University from 2005-2013 where she directed the sickle cell and hemostasis and thrombosis programs. Dr. Thornburg is committed to taking care of children with blood disorders including bleeding disorders, clotting disorders and inherited red blood cell disorders. She conducts clinical research to improve the care of individuals with blood disorders. She received an NHF Innovative Investigator Research Award and an investigator initiated award from Biomarin to study patient preferences and shared-decision making related to gene therapy for hemophilia. She is part of the WFH working group on shared decision-making. In order to educate the next generation of physicians, Dr. Thornburg teaches medical students, residents and fellows and is the Director of the Pediatric Hemostasis and Thrombosis Fellowship at RCHSD, a site for the NHF-Takeda Clinical Fellowship program. Dr. Thornburg is a member of NHF’s Medical and Scientific Advisory Council (MASAC). In addition to her career in medicine, Dr. Thornburg enjoys spending time with her family, traveling and playing tennis.

Cedric Hermans

Cedric Hermans currently heads the Division of Haematology, the Hemostasis and Thrombosis Unit as well as the Hemophilia Center of the Saint-Luc University Hospital in Brussels, Belgium. He was appointed Associate Professor at the Medical School of the Catholic University of Louvain in 2003, Full Professor in 2012 and Vice-Dean in 2015. Professor Hermans has (co)-authored more than 320 original articles in international journals and is a member of several scientific societies and international advisory boards and collaborative research projects. He is Member of the Royal Academy of Medicine of Belgium and Fellow of the Royal Colleges of Physicians of London and Edinburgh.He was president of EAHAD and is currently member of the Board of Directors of the World Federation of Haemophilia and the Editor-in-Chief of the Haemophilia Journal. His main research interests lie in the area of haemostasis and thrombosis, especially clinical studies on the treatment modalities and the wide spectrum of complications of haemophilia in both developed and developing countries, as well as new anticoagulants and the management of thrombosis.

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

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	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)

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

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

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

WHO WE ARE

SUPPORT

OUR WORK

COLLABORATE

Disclaimer

Fraud Alert

Unauthorized solicitations – Warning

Hemophilia Alliance

India - Mumbai

Year of IHTC designation: 2000

Areas of Specialty

India - Vellore

Year of IHTC designation: 2000

Areas of Specialty

Singapore - Singapore

Year of IHTC designation: 2002

Areas of Specialty

Senegal - Dakar

Year of IHTC designation: 2016

Areas of Specialty

Russia - Moscow and St. Petersburg

Year of IHTC designation: 2010

Areas of Specialty

Netherlands - Utrecht

Year of IHTC designation: 1996

Areas of Specialty

Japan - Nara

Year of IHTC designation: 1998

Areas of Specialty

Italy - Milan

Year of IHTC designation: 1972

Areas of Specialty

Israel - Tel Hashomer

Year of IHTC designation: 1993

Areas of Specialty

France - Paris

Year of IHTC designation: 1972

Areas of Specialty

Spain - Madrid