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) as amended by Quebec's Act to modernize legislative provisions as regards the protection of personal information ("Law 25"), 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"). Where applicable, additional rights and obligations may apply under the UK General Data Protection Regulation ("UK GDPR") and other applicable privacy laws.

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. PRIVACY BY DEFAULT

10. RESPONSES TO JOB OFFERS

11. PROTECTION OF THE PRIVACY OF MINORS

12. DO WE DISCLOSE YOUR PERSONAL INFORMATION TO THIRD PARTIES?

13. SHARING PERSONAL INFORMATION OUTSIDE QUÉBEC

14. HOW DO WE PROTECT YOUR PERSONAL INFORMATION?

15. RETENTION AND DESTRUCTION OF PERSONAL INFORMATION

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

17. DECISIONS BASED EXCLUSIVELY ON AUTOMATED PROCESSING

18. WITHDRAWING YOUR CONSENT

19. CHANGES TO OUR PRIVACY POLICY

20. CONTACT DETAILS FOR THE PRIVACY OFFICER

APPENDIX A

1.	PURPOSE
1.1	This WFH Digital Platforms Privacy Policy (hereinafter "Policy" or "Privacy Policy") explains not only how we collect, use, disclose and store any information related to your personal data when you visit any Website (or "Websites") or mobile applications ("Applications" or "Platforms") operated by WFH, but also how you can access, update or take control of your personal information.
1.2	This Policy replaces and updates the WFH Website Privacy Policy (IT 003).

1. PURPOSE

1.1 This WFH Digital Platforms Privacy Policy (hereinafter "Policy" or "Privacy Policy") explains not only how we collect, use, disclose and store any information related to your personal data when you visit any Website (or "Websites") or mobile applications ("Applications" or "Platforms") operated by WFH, but also how you can access, update or take control of your personal information.

1.2 This Policy replaces and updates the WFH Website Privacy Policy (IT 003).

2.	SCOPE
2.1	This Policy generally applies to: any personal information of a factual or subjective nature about an identifiable individual collected through the Websites and/or Platforms on which this Policy is posted, or through any other interactions you may have with us; WFH staff members (regular employees, temporary employees and contractual resources) and senior management who handle personal information held by WFH; visitors to our Websites and/or Platforms, our volunteers and Board members, and any person or company acting for or on behalf of WFH.
2.2	External links. This Policy does not apply to links to third-party websites, plug-ins, services, social networks or applications, including those offered via hyperlinks displayed on our Websites and/or Platforms. If you follow a link to a third-party website or use a third-party plug-in, please note that these third parties have their own privacy policies and we do not accept any responsibility or liability for those policies. We do not control these third-party websites and encourage you to read the privacy policy of each site you visit before providing them with any personal information.

5.	HOW DO WE COLLECT YOUR CONSENT?
5.1	The WFH considers you to have validly consented to the collection, use or disclosure of your personal information if (i) you give your express written or oral consent; (ii) you voluntarily provide personal information for an obvious purpose; or (iii) if you do not object to the collection, use or disclosure of personal information by the WFH within a reasonable time after the WFH has given you clear notice, including through this Policy, of its intention to do so and the intended purposes. Consent may be withdrawn at any time as set out in Section 18 of this Policy.
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.

11.	PROTECTION OF THE PRIVACY OF MINORS
11.1	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.

13.	SHARING PERSONAL INFORMATION OUTSIDE QUÉBEC
13.1	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.
13.2	In such cases, the transfer will only take place if we find that the information would be adequately protected, in particular considering the sensitivity of the information, the purpose for which it is used, the protection the information would be afforded, and the legal framework applicable in the state or province where the information would be transferred. Any transfer will also be subject to appropriate contractual agreements to ensure adequate protection.

17.	DECISIONS BASED EXCLUSIVELY ON AUTOMATED PROCESSING
17.1	In accordance with Section 12.1 of Quebec Law 25 and Article 22 of the GDPR, where WFH uses personal information to render a decision based exclusively on an automated processing of such information, WFH will, at the time of or before the decision, inform the person concerned of: the fact that the decision is based exclusively on automated processing; the personal information used to render the decision; the reasons and main factors leading to the decision; the right of the person concerned to have the personal information used to render the decision rectified, and to submit observations to a member of WFH staff who is in a position to review the decision.
17.2	As of the date of this Policy, WFH does not use systems that render decisions based exclusively on automated processing concerning individuals. This Section will be updated if such systems are introduced.

19.	CHANGES TO OUR PRIVACY POLICY
19.1	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.
19.2	Please note that both the English and French versions of our Privacy Policy have equal legal value.

20.	CONTACT DETAILS FOR THE PRIVACY OFFICER
If you have any comments, questions or requests regarding this Policy or our privacy practices, or to report any abuse by third parties, please do not hesitate to contact Antonio José Almeida, WFH Senior Director, Operations and Privacy Officer by e-mail at [email protected] or at the following postal address:
c/o Privacy Officer, World Federation of Hemophilia 1184 rue Sainte-Catherine Ouest Suite 500 Montreal, Québec H3B 1K1 Canada
We have procedures in place to receive and respond to complaints or inquiries about our handling of personal information, our compliance with this Policy and applicable privacy laws. If you are not satisfied with WFH's handling of your personal information, you may file a complaint with WFH. The complaint will be investigated by the WFH Privacy Officer, who will determine whether the handling of the information complies with WFH policies and practices and any other applicable laws. The Privacy Officer will make every reasonable effort to resolve complaints. The person filing the complaint will be informed of any progress or outcome of the investigation within a maximum of 30 working days of receipt of the request and/or any additional time required to complete the investigation.

APPENDIX A
ADDITIONAL TERMS FOR USERS LOCATED IN THE ECONOMIC EUROPEAN AREA (EEA), SWITZERLAND AND THE UNITED KINGDOM
If you are located in the European Economic Area (EEA), Switzerland, or the United Kingdom (hereinafter the “UK”), 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) / UK GDPR
1.1	If you are from the European Economic Area (EEA), Switzerland, or the United Kingdom, 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. Explicit consent for sensitive data: where the processing concerns special categories of personal data (e.g., health data), we rely on your explicit consent in accordance with Article 9 GDPR.
If you have any questions about the lawful bases upon which we collect and use your personal data, please contact: Antonio José Almeida, WFH Senior Director, Operations and Privacy Officer by e-mail at [email protected] or at the following postal address: c/o Privacy Officer, World Federation of Hemophilia, 1184 rue Sainte-Catherine Ouest, Bureau 500 Montréal, Québec H3B 1K1, Canada
2	TRANSFER OF YOUR PERSONAL INFORMATION OUTSIDE OF THE EEA, SWITZERLAND OR THE UK
2.1	We may process information outside of the EEA, Switzerland, or the UK, including Canada and the USA.
2.2	Transfer mechanisms: (i) Transfers to Canada are covered by the European Commission's adequacy decision for Canada (commercial sector), reaffirmed in January 2024, and by the corresponding UK adequacy regulations. (ii) Transfers to the United States are based on the EU-US Data Privacy Framework (adopted on July 10, 2023) when the recipient is DPF-certified, or on the European Commission's 2021 Standard Contractual Clauses (SCCs), supplemented by appropriate technical and organizational measures, including for transfers under the UK GDPR (via the UK International Data Transfer Addendum).
3	ADDITIONAL RIGHTS REGARDING YOUR PERSONAL INFORMATION UNDER THE GENERAL DATA PROTECTION REGULATION (GDPR) / UK GDPR
3.1	If you are a resident of the European Economic Area (EEA), Switzerland, or the UK, 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 16 ("Accessing, correcting, de-indexing and portability of your personal information") and in section 18 ("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. The right to lodge a complaint. You have the right to lodge a complaint with a supervisory authority. You have the right to lodge a complaint with the supervisory authority of your country of residence (e.g., CNIL in France, ICO in the United Kingdom, FDPIC in Switzerland, etc…). Please note that we may ask you to verify your identity before responding to such requests.

1. PURPOSE

1.2 This Policy replaces and updates the WFH Website Privacy Policy (IT 003).

2. SCOPE

2.1

This Policy generally applies to:

any personal information of a factual or subjective nature about an identifiable individual collected through the Websites and/or Platforms on which this Policy is posted, or through any other interactions you may have with us;
WFH staff members (regular employees, temporary employees and contractual resources) and senior management who handle personal information held by WFH;
visitors to our Websites and/or Platforms, our volunteers and Board members, and any person or company acting for or on behalf of WFH.

2.2 External links. This Policy does not apply to links to third-party websites, plug-ins, services, social networks or applications, including those offered via hyperlinks displayed on our Websites and/or Platforms. If you follow a link to a third-party website or use a third-party plug-in, please note that these third parties have their own privacy policies and we do not accept any responsibility or liability for those policies. We do not control these third-party websites and encourage you to read the privacy policy of each site you visit before providing them with any personal information.

3. DEFINITION OF "PERSONAL INFORMATION"

3.1	When used in this Privacy Policy, “personal information” means any information about an individual that can be used to identify an individual, including, but not limited to, your name, address, email address, telephone number, gender, banking details, employment, health or other information.

4. RESPONSIBILITIES OF WFH

4.1	The WFH will fulfill all requirements to protect, collect, use, disclose and retain personal information under the Acts and all other applicable laws and regulations. We attach great importance to the proper management of your data and take full responsibility for it.
4.2	The WFH will also ensure that it has reasonable security measures in place to protect and respect the confidentiality of any personal information in its custody and control.

5. HOW DO WE COLLECT YOUR CONSENT?

5.1 The WFH considers you to have validly consented to the collection, use or disclosure of your personal information if (i) you give your express written or oral consent; (ii) you voluntarily provide personal information for an obvious purpose; or (iii) if you do not object to the collection, use or disclosure of personal information by the WFH within a reasonable time after the WFH has given you clear notice, including through this Policy, of its intention to do so and the intended purposes. Consent may be withdrawn at any time as set out in Section 18 of this Policy.

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 (in accordance with Canada's Anti-Spam Legislation, "CASL"; each communication includes the sender's identity and an unsubscribe mechanism); 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	Cookie consent mechanism. When you first visit our Websites and/or Platforms, a cookie banner allows you to accept, refuse or customize your cookie preferences by category: (i) strictly necessary cookies (always active, required for the site to function); (ii) functional cookies (preferences, language); (iii) analytics cookies (anonymized statistics); and (iv) marketing cookies (advertising and retargeting). Only strictly necessary cookies are placed before your consent. You may modify your choices at any time via the "Cookie preferences" link in the footer of the Websites and/or Platforms.
8.3	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.
8.4	Google Analytics 4 (GA4). We use Google Analytics 4 (GA4), which replaced Universal Analytics on July 1, 2023, to gather information automatically about visits to our Websites and/or Platforms and to help us maintain and improve their design and content. GA4 is configured with IP anonymization, deactivation of data sharing with Google for advertising purposes, and a maximum data retention period of 14 months. GA4 collects information about the date and time when our Websites and/or Platforms were accessed and may track a user's movement within the site, but does not collect personal information that directly identifies 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 from being sent to Google.
8.5	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. Meta Pixel is only loaded after you have given prior consent through our cookie banner (see Section 8.2). Transfers of personal information to Meta (United States) are governed by the EU-US Data Privacy Framework or Standard Contractual Clauses, as applicable (see Section 12 and Appendix A).

9. PRIVACY BY DEFAULT

9.1	In accordance with Quebec Law 25 and the principle of privacy by design, WFH ensures that the default privacy settings of any technological product or service offered to the public guarantee the highest level of confidentiality, without any intervention required from the individual. This obligation does not apply to cookie settings, which are governed by Section 8 of this Policy.
9.2	Privacy considerations are integrated from the design stage of any new project, service or platform involving personal information, in accordance with the privacy by design principle.

10. RESPONSES TO JOB OFFERS

10.1	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.

11. PROTECTION OF THE PRIVACY OF MINORS

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

12. DO WE DISCLOSE YOUR PERSONAL INFORMATION TO THIRD PARTIES?

12.1	Rest assured that WFH does not sell or rent your personal information to third parties for commercial purposes. We may share your personal information only in the limited cases described below (Sections 12.2 and 12.3), and only in accordance with the Acts.
12.2	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.
12.3	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.

13. SHARING PERSONAL INFORMATION OUTSIDE QUÉBEC

13.1 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.

13.2 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.

14. HOW DO WE PROTECT YOUR PERSONAL INFORMATION?

14.1	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.
14.2	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.
14.3	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.
14.4	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.
14.5	If we become aware of a security breach involving your personal information, we will take reasonable measures to mitigate the risk of harm and prevent similar incidents, as well as notify you and the appropriate authorities as soon as possible, in accordance with the Acts.

15. RETENTION AND DESTRUCTION OF PERSONAL INFORMATION

15.1	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.
15.2	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.
15.3	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.
15.4	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.
15.5	Indicative retention periods. The following table summarizes the indicative retention periods applied by WFH: Category of personal information Indicative retention period Newsletter subscribers Until un-subscription + 12 months Donor information (with tax receipts) 7 years (tax compliance) Job applications (CV, cover letter) 3 years, then secure destruction Contact form / general inquiries 24 months after last contact Website analytics (GA4) 14 months maximum Cookies (non-essential) 13 months maximum Confidentiality incident register Minimum 5 years

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

16.1	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].
16.2	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.
16.3	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.
16.4	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.

17. DECISIONS BASED EXCLUSIVELY ON AUTOMATED PROCESSING

17.1

In accordance with Section 12.1 of Quebec Law 25 and Article 22 of the GDPR, where WFH uses personal information to render a decision based exclusively on an automated processing of such information, WFH will, at the time of or before the decision, inform the person concerned of:

the fact that the decision is based exclusively on automated processing;
the personal information used to render the decision;
the reasons and main factors leading to the decision;
the right of the person concerned to have the personal information used to render the decision rectified, and to submit observations to a member of WFH staff who is in a position to review the decision.

17.2 As of the date of this Policy, WFH does not use systems that render decisions based exclusively on automated processing concerning individuals. This Section will be updated if such systems are introduced.

18. WITHDRAWING YOUR CONSENT

18.1	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].
18.2	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.

19. CHANGES TO OUR PRIVACY POLICY

19.1 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.

19.2 Please note that both the English and French versions of our Privacy Policy have equal legal value.

20. CONTACT DETAILS FOR THE PRIVACY OFFICER

If you have any comments, questions or requests regarding this Policy or our privacy practices, or to report any abuse by third parties, please do not hesitate to contact Antonio José Almeida, WFH Senior Director, Operations and Privacy Officer by e-mail at [email protected] or at the following postal address:
c/o Privacy Officer, World Federation of Hemophilia 1184 rue Sainte-Catherine Ouest Suite 500 Montreal, Québec H3B 1K1 Canada
We have procedures in place to receive and respond to complaints or inquiries about our handling of personal information, our compliance with this Policy and applicable privacy laws. If you are not satisfied with WFH's handling of your personal information, you may file a complaint with WFH. The complaint will be investigated by the WFH Privacy Officer, who will determine whether the handling of the information complies with WFH policies and practices and any other applicable laws. The Privacy Officer will make every reasonable effort to resolve complaints. The person filing the complaint will be informed of any progress or outcome of the investigation within a maximum of 30 working days of receipt of the request and/or any additional time required to complete the investigation.

APPENDIX A

APPENDIX A
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POLÍTICAS MUNDIALES Y ACTIVIDADES DE CABILDEO

Resolución de la Asamblea Mundial de la Salud

Lista de Medicamentos Esenciales de la OMS

PACT

Academia de cabildeo del PACT

Serie de mesas redondas sobre terapia génica

Políticas mundiales y actividades de cabildeo

La Federación Mundial de Hemofilia (FMH) desempeña un papel de liderazgo en actividades de cabildeo a escala mundial al convocar a la comunidad mundial de trastornos de la coagulación para que promueva el acceso equitativo a la atención y a tratamientos tanto actuales como novedosos. Utilizamos labores de cabildeo a escala mundial y regional con el propósito de destacar el impacto que iniciativas nacionales de cabildeo tienen en las políticas, la administración de la atención, y la adquisición de productos terapéuticos.

RESOLUCIÓN DE LA ASAMBLEA MUNDIAL DE LA SALUD

El 22 de mayo de 2026, la 79ª Asamblea Mundial de la Salud (AMS) adoptó por unanimidad una resolución sobre la Acción mundial para promover la equidad en materia de salud para las personas con hemofilia y otros trastornos hemorrágicos, después de que fuera aprobada por el consejo ejecutivo de la Organización Mundial de la Salud (OMS) durante su 158ª sesión, el 3 de febrero de 2026.

¿Qué es una resolución de la Asamblea Mundial de la Salud (AMS)?

Una resolución de la Asamblea Mundial de la Salud constituye un documento de política oficial de la OMS adoptado por los estados miembros de la OMS con el propósito de establecer prioridades y políticas de salud mundiales, de orientar estrategias de salud nacionales, y de solicitar acciones específicas al Secretariado de la OMS. Si bien no son jurídicamente vinculantes según el derecho internacional, estas resoluciones representan un importante instrumento de política internacional y un compromiso político, ya que se adoptan por consenso entre todos los estados miembros de la OMS.

Acerca de la Resolución de la AMS sobre la hemofilia y otros trastornos hemorrágicos

La FMH aplaude a los estados miembros de la OMS—Armenia (el país que presentó la propuesta) y a los copatrocinadores Bosnia y Herzegovina, China, Egipto, España, Georgia, Iraq, Letonia, Malta, Marruecos, Nepal, Paraguay, la Federación Rusa, Sri Lanka y Togo– por su liderazgo de esta importante iniciativa. La FMH –como actor no estatal en relaciones oficiales con la OMS– ha estado apoyando firmemente y abogando por la adopción de esta resolución de la AMS79 sobre una Acción mundial para promover la equidad en material de salud para las personas con hemofilia y otros trastornos hemorrágicos.

La resolución de la AMS de un vistazo:

Sección 1

La Sección 1 es el preámbulo que destaca las principales disparidades que enfrentan las personas con trastornos de la coagulación en términos de subdiagnóstico y acceso desigual al tratamiento y la atención, independientemente de su tipo de trastorno, de su género o del lugar donde vivan. Describe asimismo documentos clave de política internacional de las Naciones Unidas (ONU) y de la OMS, ya existentes, con los cuales concuerda el proyecto de resolución.

Sección 2

La Sección 2 abarca las principales recomendaciones que la resolución exhorta a todos los estados miembros a implementar a nivel nacional, enfocadas en las siguientes áreas principales:

Inclusión de la hemofilia y otros trastornos de la coagulación en políticas nacionales de salud relevantes.
Incremento en la capacidad de diagnóstico y tratamiento de trastornos de la coagulación y servicios de atención integral.
Mejoramiento del acceso igualitario a medicamentos, tratamiento profiláctico y en el hogar seguros, eficaces y asequibles, incluso terapias existentes y nuevas terapias incipientes.
Fortalecimiento de sistemas nacionales de recolección de datos.
Implementación de programas que promuevan la salud mental y el apoyo psicosocial para personas con trastornos de la coagulación (PCTC) y sus familiares.
Promoción de la concientización pública y la información acerca de los trastornos de la coagulación a fin de disminuir conceptos erróneos y estigmatización, inclusive en relación con mujeres y niñas con trastornos de la coagulación (MNTC).
Empoderamiento de PCTC y participación de las organizaciones que las representan mediante el establecimiento de mecanismos consultivos.

Sección 3

La Sección 3 describe las acciones concretas que implementará la OMS, entre ellas las siguientes:

Valoración e identificación de guías y recomendaciones de la OMS sobre la hemofilia y otros trastornos de la coagulación.
Elaboración de recomendaciones de la OMS para los estados miembros sobre el fortalecimiento de las respuestas a la hemofilia y otros trastornos de la coagulación mediante políticas de salud relevantes, mecanismos de financiamiento para el tratamiento y atención multidisciplinaria.
Reconocimiento del Día mundial de la hemofilia, el 17 de abril, como día de promoción de la salud a escala mundial.
Presentación de informes bienales a la AMS sobre la implementación de la resolución como parte de la agenda mundial para las enfermedades no transmisibles.

¿Cómo puede afectar la resolución a nuestra comunidad?

Al adoptar la resolución de la AMS sobre la Acción mundial para promover la equidad en materia de salud para las personas con hemofilia y otros trastornos hemorrágicos, la OMS y sus estados miembros (gobiernos nacionales) reconocerán a los trastornos de la coagulación como una prioridad de salud a nivel mundial y tomarán medidas cruciales con miras al desarrollo de un marco global coordinado y de acciones concretas para abordar las inequidades en materia de salud que afectan a nuestra comunidad.

Etapas formales para la adopción de una resolución de la AMS

El/los estado(s) miembro(s) que encabeza(n) la propuesta propone(n) al secretariado de la OMS un debate sobre la resolución.

Septiembre de 2025

El principal estado miembro presenta al secretariado de la OMS una nota de consentimiento y un borrador inicial de la resolución.

Octubre de 2025

Consultas intergubernamentales sobre el borrador inicial a fin de lograr consenso y confirmar a los estados miembros copatrocinadores.

Dic. 2026 a ene. 2026

Se presenta el borrador final de la resolución a la 158ª sesión del consejo ejecutivo de la OMS.

Enero de 2026

Debate y decisión sobre el borrador de resolución aprobado por el Consejo Ejecutivo de la OMS.

2 al 3 de febrero de 2026

Decisión final sobre la adopción de la resolución durante la 79ª Asamblea Mundial de la Salud.

18 al 23 de mayo de 2026

Llamado mundial de la FMH por la equidad en la salud para los trastornos de la coagulación

La Federación Mundial de Hemofilia (FMH) lanzó un Llamado mundial por la equidad en la salud para los trastornos de la coagulación, en apoyo a la adopción de una resolución de la Asamblea Mundial de la Salud (AMS) sobre la Acción mundial para promover la equidad en materia de salud para las personas con hemofilia y otros trastornos hemorrágicos.

La FMH invita a todas sus organizaciones nacionales miembros (ONM) y a todas las asociaciones médicas, científicas y de pacientes colaboradoras a sumarse al Llamado mundial de la FMH por la equidad en la salud para los trastornos de la coagulación, a fin de apoyar la implementación eficaz de esta ahora adoptada resolución histórica. Las organizaciones pueden participar de dos maneras:

Poniéndose en contacto con su ministerio de salud u otras entidades encargadas de tomar decisiones y solicitando que cumplan los compromisos asumidos por todos los estados miembros mediante la implementación de esta resolución, adoptada por unanimidad durante la 79ª Asamblea Mundial de la Salud, el 21 de mayo de 2026.
Enviando un mensaje a la FMH ([email protected]) en el que soliciten unirse a nuestro Llamado mundial por la equidad en la salud para los trastornos de la coagulación.

Agradecemos el apoyo de más de 105 organizaciones que ya se han sumado a nuestro Llamado mundial.

R1
1

R2
2

R3
4

R4
7

R5
10

R6
15

R7
20

R8
27

R9
34

R10
43

R11
54

R12
65

R13
76

R14
85

R15
92

R16
97

Recursos conexos:

La FMH hace una presentación a la Asamblea Mundial de la Salud el 21 de mayo de 2026

La FMH participó en la 79ª Asamblea Mundial de la Salud presentando una declaración en apoyo a la adopción de la resolución sobre la Acción mundial para promover la equidad en materia de salud para las personas con hemofilia y otros trastornos hemorrágicos.

Decisión sobre la resolución, Asamblea Mundial de la Salud, 21 de mayo de 2026

La 79ª Asamblea Mundial de la Salud adoptó por unanimidad la resolución sobre la Acción mundial para promover la equidad en materia de salud para las personas con hemofilia y otros trastornos hemorrágicos.

Evento paralelo a la 79ª Asamblea Mundial de la Salud: Promover la equidad en la salud para los trastornos de la coagulación, 17 de mayo de 2026

Durante este evento paralelo a la Asamblea Mundial de la Salud se presentaron motivadores discursos de apertura y dos paneles de expertos a fin de destacar la importancia de la adopción de la resolución de la AMS sobre la Acción mundial para promover la equidad en materia de salud para las personas con hemofilia y otros trastornos hemorrágicos.

Presentación de la delegación de Armenia ante el consejo ejecutivo de la OMS, el 2 de febrero de 2026.

Durante la 158ª sesión del consejo ejecutivo de la OMS, Armenia presenta la resolución sobre la Acción mundial para promover la equidad en materia de salud para las personas con hemofilia y otros trastornos hemorrágicos.

Presentación de la FMH ante el consejo ejecutivo de la OMS, el 2 de febrero de 2026.

La FMH participó en la 158ª sesión del consejo ejecutivo de la OMS, exhortando a la OMS y a sus estados miembros a adoptar la resolución sobre la Acción mundial para promover la equidad en materia de salud para las personas con hemofilia y otros trastornos hemorrágicos.

Webinario: Resolución sobre equidad en materia de salud para las personas con hemofilia y otros trastornos de la coagulación.

El 29 de enero de 2026, la FMH auspició un webinario informativo sobre avances logrados para la adopción de una resolución de la Asamblea Mundial de la Salud (AMS) sobre la hemofilia y otros trastornos de la coagulación.

LISTA DE MEDICAMENTOS ESENCIALES DE LA OMS

La colaboración con agencias intergubernamentales internacionales es fundamental para el logro de la visión de la FMH. Desde 1969, la Organización Mundial de la Salud (OMS) sostiene relaciones oficiales con la FMH como actor no estatal, lo cual le ha permitido a la Federación representar eficazmente a la voz de la comunidad de trastornos de la coagulación ante partes interesadas y encargados de la toma de decisiones en el ámbito de la salud a nivel internacional.

Las Listas Modelo de Medicamentos Esenciales de la OMS comprenden medicamentos que satisfacen las necesidades médicas prioritarias de una población, los cuales se seleccionan con base en su eficacia, seguridad y rentabilidad. Estas listas modelo abarcan la Lista de Medicamentos Esenciales (LME) y la Lista de Medicamentos Esenciales para Niños (LMEn), que la OMS actualiza cada dos años y que sirven como marco de referencia para orientar a gobiernos nacionales en la selección y el financiamiento de medicamentos esenciales para diversas enfermedades, entre ellas los trastornos de la coagulación.

Un esfuerzo conjunto entre la FMH y sus aliados llevó a la actualización de la 24ª Lista de Medicamentos Esenciales y de la 10ª Lista de Medicamentos Esenciales para Niños de la OMS, a fin de alinearlas mejor con guías médicas internacionales para el tratamiento de la hemofilia y de la enfermedad de Von Willebrand (EVW). Estas trascendentales modificaciones incidirán positivamente en la vida de las personas con trastornos de la coagulación (PCTC) en todo el mundo.

Entre los cambios específicos realizados a la 24ª LME y a la 10ª LMEn para el tratamiento de la hemofilia y de la EVW se cuentan los siguientes:

Nuevos medicamentos agregados a la LME y a la LMEn

Emicizumab, anticuerpo monoclonal biespecífico: incluido en la lista principal.
Concentrados de FVIII y FIX recombinantes: incluidos en la lista principal.

Revisiones a medicamentos ya incluidos en la LME y en la LMEn

Concentrados de FVIII y FIX derivados de plasma: transferidos de la lista complementaria a la lista principal.
Desmopresina: transferida de la lista complementaria a la lista principal.

Medicinas o fórmulas eliminadas de la LME y de la LMEn

Crioprecipitados con y sin reducción de patógenos: eliminados como indicaciones para el tratamiento de la hemofilia y de la EVW.
Complejo de factor IX (concentrado de complejo protrombínico, CCP): eliminado como alternativa terapéutica para los concentrados de FIX.

A continuación encontrará más información y recursos relevantes.

Webinario: Actualización sobre la modificación de 2025 a la Lista de Medicamentos Esenciales de la OMS

Este webinario aborda las recientes importantes revisiones a la Lista de Medicamentos Esenciales (LME) de la Organización Mundial de la Salud (OMS). “Actualización 2025 de la Lista de Medicamentos Esenciales de la OMS: Impacto en la comunidad de trastornos de la coagulación” describe la forma en la que pueden aprovecharse estas revisiones para incidir positivamente en las vidas de personas con trastornos de la coagulación en todo el mundo.

Video del panel de expertos de la FMH sobre la actualización de la LME y de la LMEn de la OMS

La charla de este panel de expertos aborda las actualizaciones de 2025 a la LME y a la LMEn de la OMS y su impacto en la comunidad de trastornos de la coagulación.

PACT

El nuevo Programa de Acceso a Atención y Tratamiento (PACT, por su sigla en inglés) de la FMH es una iniciativa de cinco años, que concluirá en el 2025, diseñada a fin de mejorar la identificación y el diagnóstico, e incrementar el acceso a la atención sustentable para personas con trastornos de la coagulación hereditarios. Esto se logrará a través de la capacitación y la instrucción, de alianzas, de iniciativas por país, y de actividades de cabildeo basadas en pruebas científicas. Para ver la actualización a dos años del Programa PACT de la FMH haga clic aquí.

La necesidad

Las personas de las comunidades de trastornos de la coagulación enfrentan diversos desafíos para obtener acceso a la atención adecuada en muchos países del mundo. La brecha entre el número conocido y el número esperado de personas con hemofilia es aún más grande de lo que se calculaba anteriormente, con solo un tercio del número esperado de personas con hemofilia identificado hasta ahora a escala mundial. El objetivo del PACT es apoyar a la comunidad mundial de trastornos de la coagulación abordando estas necesidades.

Metas del PACT

Los objetivos del PACT son los siguientes:

Identificar a 20,000 nuevas personas con trastornos de la coagulación.
Mejorar el acceso a la atención mediante la capacitación y formación de líderes de pacientes y proveedores de atención médica en las áreas de identificación, diagnóstico, tratamiento de trastornos de la coagulación, y actividades de cabildeo basadas en pruebas científicas.
Incrementar el apoyo gubernamental para establecer programas nacionales de atención de los trastornos de la coagulación o ampliar los programas ya existentes.

Componentes del programa

El Programa se implementará a través de los siguientes tres componentes clave.

Capacitación e instrucción en línea

La Academia de Cabildeo del PACT proporcionará a líderes de ONM y defensores de pacientes las habilidades y conocimientos necesarios para realizar exitosas campañas de cabildeo basado en pruebas científicas, inclusive conceptos básicos y principios de la atención, acceso a terapias y adquisiciones, e introducción a la economía de la salud, así como diseño e implementación de programas de cabildeo.

Sesiones anuales de capacitación virtual para proveedores de atención médica, centradas en la identificación, el diagnóstico y el tratamiento de trastornos de la coagulación. Se realizará una evaluación de los resultados de la capacitación en curso a fin de proporcionar una valoración de necesidades adicionales, así como para calcular la capacidad de avance.

Planes nacionales de acceso

Planes nacionales de acceso individualizados, de cuatro a cinco años de duración, que abarcarán capacitación personalizada y apoyo in situ para campañas de identificación y cabildeo, con el propósito de incrementar el apoyo de los gobiernos nacionales. Se fomentará la colaboración entre las principales partes interesadas ‒la ONM, los proveedores de atención médica y los gobiernos nacionales‒ a fin de maximizar el éxito de estos programas.

Mentoría por parte de expertos en el tema para ONM de países específicos, con el objeto de apoyar la implementación de los planes nacionales de acceso. La duración de estas mentorías podrá ser de seis meses a cuatro años, dependiendo de las necesidades locales,

Reuniones mundiales y regionales

Reuniones regionales y mundiales (a partir de 2022) que servirán como foros para compartir entre líderes comunitarios las mejores prácticas y experiencias de cabildeo basado en pruebas científicas. Estos foros colaborativos reunirán a líderes de ONM, proveedores de atención médica y representantes gubernamentales con la finalidad de fomentar el diálogo e incrementar la participación entre partes interesadas.

Convocatoria de expresiones de interés para convertirse en mentor(a) del Programa PACT

La FMH busca pesonas voluntarias expertas en temas específicos para fungir como mentoras de ONM de los países inscritos al Programa PACT de la FMH, y apoyar la implementación de sus planes nacionales de acceso.

OBJETIVO

El principal objetivo de la mentoría es proporcionar orientación y experiencia a ONM de la FMH, en una o más de las áreas temáticas o de capacidad organizacional mencionadas más abajo, a fin de maximizar el impacto de los planes nacionales de acceso de las ONM, en el marco del Programa PACT.

DURACIÓN

La duración de la mentoría podrá ser de seis meses a cuatro años y se definirá caso por caso, dependiendo de las necesidades locales y de la disponibilidad de la persona que ofrecerá la mentoría.

ÁREAS DE EXPERIENCIA

La FMH busca mentores(as) con amplios conocimientos y experiencia en una o más de las siguientes áreas:

Programas nacionales para la atención de los trastornos de la coagulación y administración de la atención

Desarrollo de programas nacionales para la atención de los trastornos de la coagulación (o de la hemofilia).
Establecimiento de consejos o comités nacionales sobre trastornos de la coagulación o hemofilia.
Preparación de guías nacionales de tratamiento.
Establecimiento de centros de tratamiento de hemofilia.

Cabildeo y apoyo gubernamental

Planificación e implementación de campañas de cabildeo.
Recolección y uso de datos en actividades de cabildeo.
Comprensión de la economía de la salud y de las valoraciones de tecnologías de la salud.
Incrementar el acceso a terapias seguras y modelos de adquisición de productos terapéuticos.
Gestión de las relaciones con partes interesadas.

Capacidades organizacionales y liderazgo de ONM

Apoyo para el desarrollo de la gobernanza y el liderazgo.
Mejoras al desarrollo organizacional de la ONM, incluyendo representación regional o capítulos.
Elaboración de planes estratégicos.
Redacción de propuestas de proyectos y gestión del ciclo de los proyectos.
Elaboración de planes de comunicación.
Reclutamiento y retención de voluntarios.
Implementación de campañas de recaudación de fondos y movilización de recursos.

Programas y servicios educativos y de concientización para ONM

Diseño e implementación de programas de concientización para la identificación de nuevas personas con trastornos de la coagulación.
Uso de herramientas digitales en programas educativos y/o de concientización.
Diseño e implementación de proyectos relacionados con cualesquiera de los siguientes temas:
- Concientización e instrucción sobre la EVW.
- Liderazgo y participación juvenil.
- Concientización e instrucción sobre temas relacionados con mujeres y niñas con trastornos de la coagulación hereditarios.
Diseño e implementación de otros programas de instrucción y desarrollo de la capacidad para pacientes o proveedores de atención médica.
Creación de registros (padrones) de pacientes y otros programas de recolección de datos.

Cómo funcionan las mentorías

Todas las personas que presenten una solicitud para sumarse al Programa PACT como mentores(as) recibirán un acuse de recibo y su nombre se agregará a la base de datos de mentores potenciales. A esto seguirá un proceso de emparejamiento, tomando en cuenta la experiencia de la persona que ofrecerá la mentoría y las necesidades de ONM que actualmente implementan proyectos nacionales como parte del Programa PACT. Una vez que se establezca una coincidencia adecuada se establecerá contacto con la persona candidata a la mentoría a fin de confirmar su selección.

Enseguida se programará una reunión de presentación entre la persona que ofrecerá la mentoría y la ONM, facilitada por personal de la FMH, con el propósito de abordar los objetivos y el ámbito de la mentoría, y de establecer la disposición de ambas partes para trabajar juntas. Una vez iniciada la mentoría, la FMH solicitará tanto a la persona que proporciona la mentoría como a la ONM que presenten informes de avances periódicos.

Los siguientes son algunos ejemplos del tipo de apoyo que un(a) mentor(a) podría proporcionar a una ONM:

Orientar y asesorar sobre áreas específicas, según se hayan definido en el documento de ámbito de la mentoría acordado.
Revisar y proporcionar comentarios sobre diversos documentos, políticas y guías (ya sea nacionales o internos de la ONM).
Hacer presentaciones en reuniones o eventos como experto(a) en la materia.

Como presentar una solicitud para convertirse en mentor del Programa PACT de la FMH

Se invita a las personas interesadas, con experiencia y conocimientos demostrados en alguna de las áreas antes mencionadas, a enviar su CV y el Formulario de expresión de interés en una mentoría completado a [email protected].

¡Presentamos nuestro Informe de impacto 2025!

Descubra los transformadores resultados de nuestras iniciativas, que destacan los cambios positivos que hemos aportado a la comunidad mundial de trastornos de la coagulación.

PAÍSES PARTICIPANTES

Los componentes de capacitación e instrucción en línea y de reuniones mundiales y regionales del PACT están disponibles para todos los países, al tiempo que se seleccionarán 20 países con los cuales se trabajará en el desarrollo y la implementación de planes nacionales de acceso. Los países se seleccionan con base en los siguientes criterios:

Indicadores demográficos y económicos
Fortaleza y compromiso de los líderes locales
Nivel de atención de los trastornos de la coagulación en sus sistemas de atención de la salud
Posibilidades generales de éxito

Los siguientes países se inscribieron al PACT: Argentina, Bangladesh, Bolivia, Brasil, China, Costa Rica, Egipto, India, Indonesia, Kenia, Malasia, México, Nepal, Nigeria, Pakistán, Palestina, Senegal, Uzbekistán, Vietnam y Zambia.

EL PROGRAMA PACT RECIBE APOYO FINANCIERO DE:

ALIADA VISIONARIA

ALIADAS DE LIDERAZGO

ALIADA COLABORADORA

ACADEMIA DE CABILDEO DEL PACT

La nueva edición de la Academia de cabildeo del PACT proporciona a líderes y defensores de ONM las habilidades y los conocimientos necesarios para realizar exitosas campañas de cabildeo basadas en pruebas científicas, prestando especial atención al acceso al tratamiento. El curso de tres meses abarca los siguientes temas:

Tratamientos existentes y novedosos para los trastornos de la coagulación
Determinantes de la salud basados en datos
Instrumentos de política internacional (Resolución de la Asamblea Mundial de la Salud, Lista de Medicamentos Esenciales de la OMS, etc.)
Elementos clave para la elaboración de un informe de políticas
Mecanismos de adquisición
Introducción a la economía de la salud

Para obtener más información escriba a [email protected].

El curso actualmente se ofrece en inglés.

“Una de las principales cosas que aprendí en la Academia de cabildeo del PACT fue utilizar el pensamiento sistémico para gestionar proyectos de cabildeo. He aplicado el análisis de partes interesadas en mis labores de cabildeo y he dirigido talleres sobre el mapeo de partes interesadas… a fin de compartir lo que aprendí con el grupo de jóvenes con hemofilia de Tailandia y con otros grupos de pacientes con enfermedades poco comunes.» – Ekawat Suwantaroj, miembro del consejo de la FMH y de la Fundación Tailandesa de Hemofilia

“Quisiera agradecer a la FMH por brindarme la oportunidad tan hermosa de estudiar con personas de diferentes regiones.» – Participante, 2022

Este curso es resultado de una colaboración entre la Federación Mundial de Hemofilia (FMH), la Escuela de Posgrado en Servicio Público Robert F. Wagner de la Universidad de Nueva York (NYU Wagner) y un grupo de trabajo de expertos.

Cada tema abarca entre tres y quatro semanas e incluye un módulo de aprendizaje autodirigido en línea y dos webinarios interactivos en vivo. Una plataforma en línea permite a los participantes realizar un seguimiento de sus avances y consultar módulos anteriores.

Durante el curso, los participantes deben elaborar su propio informe de políticas real para su ONM. En el caso de participantes de países inscritos al PACT, este proyecto debería estar alineado con el plan de acceso nacional del PACT.

Obtenga más información sobre las Iniciativas de cabildeo de la Academia de Cabildeo del PACT de la FMH:

Si tuviera cualquier pregunta sobre el programa de la Academia de cabildeo del PACT escriba a la FMH a [email protected].

CABILDEO BASADO EN PRUEBAS CIENTÍFICAS

La información recolectada a través de los programas de recolección de datos de la FMH se utiliza para subrayar discrepancias en la atención alrededor del mundo, así como para crear gráficas, cuadros, infográficas y herramientas que ONM y proveedores de atención médica pueden utilizar a fin de fortalecer labores de cabildeo.

Gráficas interactivas del SMA

La FMH ha creado un sistema de visualización de datos fácil de usar, el cual ofrece la posibilidad de realizar consultas individualizadas, en tiempo real. Este sistema permite al usuario explorar y comparar datos recientes e históricos para adaptarlos a todas las necesidades de investigación, cabildeo y presentación de informes.

Ver y descargar gráficas de los datos del SMA preparadas usando nuestro nuevo sistema de recolección de datos.

Principales mini informes con temas específicos

Los mini informes del SMA de la FMH constituyen herramientas de cabildeo que proporcionan contexto y una perspectiva más profunda respecto a los datos del SMA.

Publicaciones revisadas por expertos

También se encuentran disponibles publicaciones revisadas por expertos sobre datos mundiales y padrones de pacientes, relevantes para la hemofilia y otros trastornos de la coagulación.

Stonebraker JS, Bolton-Maggs PHB, Brooker M, Evatt B, Iorio A, Makris M, O’Mahony B, Skinner MW, Coffin D, Pierce GF, Tootoonchian E, The World Federation of Hemophilia Annual Global Survey 1999‐2018. Haemophilia. 2020 Jul;26(4):591-600. doi: 10.1111/hae.14012. Epub 2020 Jun 4.

Iorio A, Stonebraker JS, Chambost H, Makris M, Coffin D, Herr C, Germini F; Data and Demographics Committee of the World Federation of Hemophilia, Establishing the Prevalence and Prevalence at Birth of Hemophilia in Males: A Meta-analytic Approach Using National Registries. Ann Intern Med. 2019 Oct 15;171(8):540-546. doi: 10.7326/M19-1208. Epub 2019 Sep 10.

Coffin D, Herr C, O’Hara J, Diop S, Hollingsworth R, Srivastava A, Lillicrap D, van den Berg HM, Iorio A, Pierce GF. World bleeding disorders registry: The pilot study. Haemophilia. 2018 Feb;e113-e116.

Iorio, A., Stonebraker, J. S., Brooker, M., Soucie, J. M. on behalf of the Data and Demographics Committee of the World Federation of Hemophilia (2017), Measuring the quality of haemophilia care across different settings: a set of performance indicators derived from demographics data. Haemophilia. 2017 Jan;23(1):e1-e7. doi: 10.1111/hae.13127. Epub 2016 Dec 8.

SERIE DE MESAS REDONDAS SOBRE TERAPIA GÉNICA

La serie de mesas redondas de la FMH sobre terapia génica (MRTG) se realizó entre 2018 y 2022. Durante ellas se reunieron organizaciones nacionales miembros (ONM) de la FMH, defensores de pacientes, proveedores de atención médica (PAM), legisladores y representantes de la industria a fin de dialogar sobre los actuales avances a nivel mundial y los desafíos esperados relacionados con la terapia génica para la hemofilia.

¿Le interesan otros eventos sobre terapia génica? La FMH auspiciará un Taller sobre nuevas tecnologías y terapia génica, en noviembre de 2024. Para obtener más información escriba a [email protected].

Objetivos

El objetivo de esta serie fue fomentar una mejor comprensión de los problemas relacionados con el desarrollo de la terapia génica para personas con hemofilia (PCH) alrededor del mundo. Los principales desafíos y debates se centraron en torno al acceso mundial a la terapia génica, los retos reglamentarios y financieros, las incógnitas de la terapia génica y el seguimiento a largo plazo de la seguridad y eficacia de la misma. También se consideraron perspectivas globales y de múltiples partes interesadas. Ya se publicaron los informes de las MRTG de la FMH.

Comité del Programa de mesas redondas sobre terapia génica

Presidente
Glenn Pierce, EE. UU.

Miembros
Los miembros que conforman el comité son un grupo revolvente de ocho profesionales de la salud y personas con un trastorno de la coagulación y/o sus cuidadores.

Previous programs are available here:

PROGRAMAS DE LAS MRTG DE LA FMH

Publicaciones

Pierce GF et al., Haemophilia. 2020;26:443–449.

Pierce GF et al., Haemophilia, 2019 Mar;25(2):189-194.

¿Sabía usted que…?

El Registro Mundial de trastornos de la coagulación (RMTC) es el único registro mundial que recolecta datos clínicos estandarizados sobre personas con hemofilia (PCH).

Lea toda la historia

Eventos próximos

Manténgase informado(a)

Manténgase al tanto de los acontecimientos más recientes en la comunidad de trastornos de la coagulación, desde avances médicos hasta eventos relevantes.

Política de privacidad de las plataformas digitales de la FMH

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.

PRIVACY BY DEFAULT

10.

RESPONSES TO JOB OFFERS

11.

PROTECTION OF THE PRIVACY OF MINORS

12.

DO WE DISCLOSE YOUR PERSONAL INFORMATION TO THIRD PARTIES?

13.

SHARING PERSONAL INFORMATION OUTSIDE QUÉBEC

14.

HOW DO WE PROTECT YOUR PERSONAL INFORMATION?

15.

RETENTION AND DESTRUCTION OF PERSONAL INFORMATION

16.

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

17.

DECISIONS BASED EXCLUSIVELY ON AUTOMATED PROCESSING

18.

WITHDRAWING YOUR CONSENT

19.

CHANGES TO OUR PRIVACY POLICY

20.

CONTACT DETAILS FOR THE PRIVACY OFFICER

APPENDIX A

APPENDIX A

Condiciones de uso de las plataformas digitales de la FMH

Políticas mundiales y actividades de cabildeo

RESOLUCIÓN DE LA ASAMBLEA MUNDIAL DE LA SALUD

¿Qué es una resolución de la Asamblea Mundial de la Salud (AMS)?

Acerca de la Resolución de la AMS sobre la hemofilia y otros trastornos hemorrágicos

La resolución de la AMS de un vistazo:

Sección 1

Sección 2

Sección 3

¿Cómo puede afectar la resolución a nuestra comunidad?

Etapas formales para la adopción de una resolución de la AMS

Llamado mundial de la FMH por la equidad en la salud para los trastornos de la coagulación

Agradecemos el apoyo de más de 105 organizaciones que ya se han sumado a nuestro Llamado mundial.

Recursos conexos:

La FMH hace una presentación a la Asamblea Mundial de la Salud el 21 de mayo de 2026

Decisión sobre la resolución, Asamblea Mundial de la Salud, 21 de mayo de 2026

Evento paralelo a la 79ª Asamblea Mundial de la Salud: Promover la equidad en la salud para los trastornos de la coagulación, 17 de mayo de 2026

Presentación de la delegación de Armenia ante el consejo ejecutivo de la OMS, el 2 de febrero de 2026.

Presentación de la FMH ante el consejo ejecutivo de la OMS, el 2 de febrero de 2026.

Webinario: Resolución sobre equidad en materia de salud para las personas con hemofilia y otros trastornos de la coagulación.

LISTA DE MEDICAMENTOS ESENCIALES DE LA OMS

Entre los cambios específicos realizados a la 24ª LME y a la 10ª LMEn para el tratamiento de la hemofilia y de la EVW se cuentan los siguientes:

A continuación encontrará más información y recursos relevantes.

Webinario: Actualización sobre la modificación de 2025 a la Lista de Medicamentos Esenciales de la OMS

Video del panel de expertos de la FMH sobre la actualización de la LME y de la LMEn de la OMS

PACT

La necesidad

Metas del PACT

Componentes del programa

OBJETIVO

DURACIÓN

ÁREAS DE EXPERIENCIA

Cómo funcionan las mentorías

Como presentar una solicitud para convertirse en mentor del Programa PACT de la FMH

¡Presentamos nuestro Informe de impacto 2025!

PAÍSES PARTICIPANTES