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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.

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Cumbre mundial de la FMH sobre políticas y acceso a tratamiento

La tercera edición de la Cumbre mundial de la FMH sobre políticas y acceso a tratamiento (GPAS por su sigla en inglés) tendrá lugar del 6 al 7 de julio de. Únase a sus colegas para:

Compartir estrategias a fin de preservar e impulsar la atención de los trastornos de la coagulación en un mundo pandémico en rápida evolución.
Promover el diálogo y el intercambio de conocimientos entre organizaciones nacionales miembros (ONM), proveedores de atención médica, y gobiernos nacionales.

Las presentaciones y charlas durante la cumbre virtual de dos días de duración se centrarán en torno a incrementar el acceso al diagnóstico, la atención y el tratamiento para personas que viven con trastornos de la coagulación. La conferencia contará con ponentes y participantes de organizaciones aliadas locales e internacionales, representantes de gobiernos nacionales, profesionales de la salud, líderes de ONM de la FMH, y defensores de la comunidad de trastornos de la coagulación.

La Cumbre mundial de la FMH sobre políticas y acceso a tratamiento (GPAS por su sigla en inglés) constituye una oportunidad única a fin de documentar, debatir e intercambiar conocimientos sobre estrategias para incrementar el acceso equitativo a la atención y el tratamiento para la comunidad mundial de trastornos de la coagulación. ¡Esperamos conectarnos con ustedes virtualmente en julio próximo!

También disponible en: English Français Español

Join us online at #MSKCongress

Cumbre mundial de la FMH sobre políticas y acceso a tratamiento

[email protected]

Patrocinadores

La tercera edición de la Cumbre mundial de la FMH sobre políticas y acceso a tratamiento (GPAS por su sigla en inglés) recibe apoyo financiero de Hemophilia Alliance y de sus centros de tratamiento de hemofilia (CTH) miembros, en todo Estados Unidos.

SILVER SPONSORS

COMITÉ Y ORADORES

Conozca a los miembros del Grupo mundial de la FMH sobre políticas públicas y cabildeo, quienes supervisan la preparación del programa de la GPAS 2023:

Abdoulaye Loum

President
Association Sénégalaise des Hémophiles (ASH)
Dakar, Senegal

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Adriana Velasquez Berumen

Team Lead Medical Devices and In Vitro Diagnostics, MDD,
World Health Organization,
Geneva, Switzerland

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Alain Baumann

Director ejecutivo,
Federación Mundial de Hemofilia
Montreal, Canadá

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Alok Srivastava

Professor

Christian Medical College

India

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Bill Robie

Director, State Government Relations
National Hemophilia Foundation
United States

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Bradley Rayner

Head of Programmes
South African Haemophilia Foundation
South Africa

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Brian O’Mahony

Director ejecutivo
Sociedad Irlandesa de Hemofilia
Dublín, Irlanda

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Cedric Hermans

Head, Hemophilia Center
Cliniques Universitaires Saint-Luc
Germany

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Cesar Garrido (Chair)

Presidente
Federación Mundial de Hemofilia
Caracas, Venezuela

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Clive Ondari

Director of Health Products Policy and Standards,
World Health Organization,
Geneva, Switzerland

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Courtney Thornburg

Medical Director

Hemophilia and Thrombosis Treatment Center at Rady Children’s Hospital-San Diego

United States

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David Page

David Page
Director of Health Policy
The Canadian Hemophilia Society (CHS)

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Dawn Rotellini

Chief Operating Officer
National Bleeding Disorders Foundation
Gibsonia, United States

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Donna Coffin

Director, Research & Education
World Federation of Hemophilia
Canada

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Ekawat Suwantaroj

Vice President of the Thai Hemophilia Patient Club
Thai Hemophilia Society
Bangkok, Thailand

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Emna Gouider

Jefa del Departamento de Hematología Biológica
Hospital Aziza Othmana – Universidad Tunis El Mana
Túnez, Túnez

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Erich Vinicius de Paula

Medical Consultant of the National Program for Hereditary Bleeding Disorders
Ministry of Health in Brazil
Brazil

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Flerida Hernandez

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

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Guadalupe Lagrada

Head, Regional Development
World Federation of Hemophilia
Montreal, QC

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James Kago

Haemophilia A
board Member of Kenya Haemophilia Association
Kenya

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Juan Andrés Pereira de Souza

President
Asociación De Hemofilia Del Uruguay
Montevideo, Uruguay

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Julia Chadwick

Education Materials Coordinator, WFH

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Juliana Hagembe

Outreach & Diagnosis Consultant,
World Federation of Hemophilia,
Nairobi, Kenya

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Latifa Lamhene

Member, Association Nationale des Hémophiles, Algeria

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Len Valentino

CEO
National Hemophilia Foundation
United States

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Mark Skinner

President and CEO
Institute for Policy Advancement Ltd
United States

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Marko Marinic

Miembro lego del consejo directivo
Federación Mundial de Hemofilia
Zagreb, Croacia

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Megan Adediran

Directora ejecutiva
Fundación de Hemofilia de Nigeria
Kaduna, Nigeria

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Mina (Kate) Hill

Haemophilia Nurse Co-Ordinator
South African Haemophilia Foundation
South Africa

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Mohammed Soliman

Member
Egyptian Society of Hemophilia
Egypt

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Nathan Connell

Assistant Professor of Medicine
Brigham and Women’s Faulkner Hospital
Boston, United States

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Nawal Eltayeb

Member
Sudanese Hemophilia Care Association
Sudan

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Premroop Alva

President,
Hemophilia Federation (India),
India

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Rana Saifi

Gerente regional, Mediterráneo del Este
Federación Mundial de Hemofilia
Montreal, Canadá

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Salome Mekhuzla

Directora de Desarrollo mundial
Federación Mundial de Hemofilia
Montreal, Canadá

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Tahani Ali

Professor, M.D.
Hematology & blood transfusion, Faculty of medicine, Damascus University
Syria

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Victor Jimenez

Associate Professor
Universidad Autónoma de Madrid
Spain

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Yannick Collé

Co-Leader
French NMO WBD Committee
Six-Fours-les-Plages, France

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Información para la inscripción

¡Inscríbase ahora a este evento gratuito exclusivamente virtual! La inscripción garantiza su acceso a todas las sesiones del 6 y el 7 de julio, excepto a las conversaciones con partes interesadas clave, las cuales son exclusivamente por invitación.

Para obtener más información sobre la inscripción escriba a [email protected].

La FMH puede ofrecer eventos como la GPAS de manera gratuita gracias al apoyo recibido de nuestros generosos donantes. Al hacer un donativo a la FMH estará apoyando iniciativas de cabildeo nacionales y mundiales, a fin de dar voz a todas las personas con trastornos de la coagulación. Su apoyo es vital—agradeceremos considere hacer un donativo hoy en give.wfh.org

RECURSOS RELEVANTES

¿Le interesa ponerse al día sobre las sesiones de las GPAS 2021 y 2022? Vea las grabaciones de sesiones selectas en la Plataforma de aprendizaje electrónico de la FMH.

VIAJAR

Preguntas frecuentes

Please contact [email protected] for more information.

¿Quién se beneficiará participando en la GPAS?

Líderes y defensores de ONM de la FMH
Profesionales de la salud
Gobiernos nacionales
Otras organizaciones que representan los intereses de personas con trastornos de la coagulación
Agencias gubernamentales regionales y mundiales (tales como la OMS, etc.) y organizaciones aliadas
Representantes de la industria
Investigadores, y cualquier persona con interés en el campo de los trastornos de la coagulación

R	¿Habrá grabaciones disponibles después del evento?
P	Todas las sesiones estarán disponibles bajo demanda durante 60 días, hasta el 31 de agosto de 2023. Puede acceder a ellas en esta misma plataforma de eventos. Las grabaciones de las sesiones en inglés aparecerán en 24 horas. El resto de idiomas estarán disponibles pocas semanas después de que finalice el evento.

Q	¿Habrá interpretación en vivo?
A	El evento contará con interpretación en vivo en español, francés, árabe y ruso.

Q	¿Cuándo recibiré la información para iniciar sesión a fin de tener acceso al evento virtual?
A	La información para iniciar sesión se enviará a todos los participantes inscritos el 4 de julio de 2023.

NOTICIAS SOBRE EVENTOS

¡Es oficial! Ya están abiertas las inscripciones y el alojamiento para el Congreso Mundial 2024 de la FMH

Ya se abrieron oficialmente las inscripciones y el alojamiento para el Congreso Mundial 2024 de la FMH que tendrá lugar en Madrid, España, del 21 al 24 de abril. Nuestras competitivas cuotas de inscripción y múltiples opciones hoteleras facilitarán que usted participe en lo que será el mayor evento para la comunidad mundial de trastornos de la coagulación el año próximo. ¡Decídase hoy y reserve un lugar para unirse a sus colegas de todo el mundo!

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13o Foro Mundial de la FMH: ¡Marque su calendario e inscríbase ahora!

¡Marque su calendario y acompáñenos en persona en Canadá, este otoño, a fin de explorar los avances más recientes en tratamientos y tecnologías para los trastornos de la coagulación! El 13o Foro Mundial de la Federación Mundial de Hemofilia (FMH) tendrá lugar del 17 al 18 de noviembre de 2023, en el hotel Fairmont Queen Elizabeth, en Montreal. Este evento constituye una singular oportunidad para interactuar con personas afines y aprender más sobre las novedades actuales de la comunidad mundial de trastornos de la coagulación.

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Conozca más acerca del Congreso Mundial 2024 de la FMH

El próximo será un año importante para la comunidad mundial de trastornos de la coagulación, ya que la Federación Mundial de Hemofilia (FMH) y la Federación Española de Hemofilia (Fedhemo) auspiciarán el Congreso Mundial 2024 de la FMH en Madrid, España, del 21 al 24 de abril. El evento será el más completo del año en nuestro campo, y reunirá en un solo lugar a todas las partes interesadas de la comunidad internacional de trastornos de la coagulación. En pocas palabras, ¡no debe perdérselo! El objetivo del Congreso es impulsar las innovaciones en el tratamiento de la hemofilia mediante enfoques novedosos, avances en la investigación, e iniciativas de colaboración. Acompáñenos e incremente sus conocimientos y sus contactos, a la vez que apoya a la FMH para que podamos continuar ofreciendo apoyo a escala mundial.

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Disclaimer

The information on the WFH website is provided for general information purposes only. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific medical problem, the WFH recommends that you contact your physician or local treatment centre. Before administering any products, the WFH urges patients to check dosages with a physician or hemophilia centre staff, and to consult the pharmaceutical company’s printed instructions.

While every effort has been made to ensure the accuracy of the information on this site, the WFH does not guarantee the information is accurate, and is not responsible in any way whatsoever for damages arising out of the use of this website or any of the information contained herein.

Messages posted to WFH discussion forums, Facebook, Twitter, and other social media platforms do not represent the opinions of the World Federation of Hemophilia, its staff, or Board of Directors. The author of a message is solely responsibility for its content. Information posted on WFH social networks and platforms should never be a substitute for individualized professional medical advice, even when the author has medical qualifications or is considered an authority. Information posted to a discussion group should not be used to diagnose or treat a specific health problem without consulting a qualified healthcare professional. The WFH recommends that you contact your physician or local treatment centre if you have any individual questions or concerns.

References and links to other websites or references to other organizations, products, services, or publications do not constitute endorsement or approval by the WFH. The WFH is not responsible and assumes no liability for the content of any linked websites.

Fraud Alert

Unauthorized solicitations – Warning

The WFH has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH staff or falsely stating that they are associated with the WFH. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH, are fraudulent and come from outside of our organization.

If you receive a suspicious solicitation, exercise extreme caution. In the case of an email, look at the email address to see if it looks suspicious (for example, all WFH emails come from @wfh.org).

We are asking you to remain vigilant, and if you have any doubts about the correspondence, please forward the email to the WFH at [email protected] or call +1 514-875-7944.