Inicio »

Tratamiento y atención

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

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

2. SCOPE

2.1

This Policy generally applies to:

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

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

3. DEFINITION OF "PERSONAL INFORMATION"

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

4. RESPONSIBILITIES OF WFH

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

5. HOW DO WE COLLECT YOUR CONSENT?

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

5.2 In some cases, the WFH may collect personal information about an individual without their consent in accordance with the Acts or any other law or regulation that permits doing so.

6. WHY WE COLLECT PERSONAL INFORMATION

6.1	We strongly believe in both minimizing the information we collect and limiting its use and purpose. WFH uses your personal information only for the purposes and for the duration required for which it was collected, or for any use that may be required or permitted by legal compliance, government request, court order or other lawful purpose.
6.2	We collect personal information for a variety of reasons. In general, WFH collects only the personal information necessary to fulfill its mission. We may also collect information for administrative purposes — to better understand the visitors who come to our websites and/or Platforms and the content of our websites and/or Platforms that is of interest to them. The purposes for which we collect personal information include, but are not limited to: Improve the content, offering, appearance and usefulness of our Websites and/or Platforms; Send, subject to your right to withdraw your consent as set out in this Policy, periodic emails; Personalize your experience by responding to your needs; Provide you with information or resources you have requested; Process a donation and issue tax receipts; Meet legal and regulatory requirements; Prevent potentially prohibited or illegal activities for risk management, fraud detection and security purposes.
6.3	Wherever possible, rather than using personal information, we will anonymize and/or aggregate personal information so that it no longer identifies an individual and use it for the purposes stated above or for any purpose permitted by law.
6.4	If we ever wish to use or disclose your personal information for purposes other than those specifically described in this Policy, we will obtain your consent.

7. WHAT PERSONAL INFORMATION DO WE COLLECT?

7.1	WFH only collects personal information that is directly related to one of our programs or activities. We take steps to ensure that the personal information we collect about you is adequate, relevant, not excessive and used for limited purposes. We collect only the information we need.
7.2	The WFH collects information on its Websites and/or Platforms in two ways:
7.2.1	Information you provide directly to us: In many cases, we collect personal information directly from you when you provide your information by subscribing to our Newsletter, when you fill out other forms on our Websites and/or Platforms, when you make an inquiry or when you contact us in person or through the WFH Websites and/or Platforms. The provision of this information is strictly voluntary. We strongly encourage you not to provide any information beyond what is necessary.
7.2.2	Information collected automatically: You should be aware that when you access or browse our Websites and/or Platforms, an exchange of information, subject to your prior consent, takes place automatically between your device and WFH's hosting environment. This exchange is required only because of the technological demands inherent in Internet browsing and is used for statistical purposes to improve your experience — the information exchanged does not identify you personally. The information exchanged is as follow: The domain name of your internet service provider; Your computer's truncated IP address (your IP address is changed, making it impossible to link to you); The type of browser (Chrome, Edge, Firefox, Safari, etc.) and operating system (Windows, Mac OS, etc.) used; The date and time of your visit; The pages you consult and the duration of these consultations; The address of the referring site, if you access WFH Websites and Platforms from another site. WFH retains only the information necessary to count the number of visitors, the most frequently visited pages, the technology used by visitors, the referring sites and the country of origin of visitors. This information is not used in any way to compile, communicate or exchange lists of users/visitors.
7.3	By using the WFH Websites and/or Platforms, you agree to the terms and conditions set forth in this Privacy Policy.

8. USE OF COOKIES

8.1	The main types of data collected on WFH Websites and/or Platforms are cookies and personalization settings. Cookies are small text files that are downloaded when you visit certain pages of a site and stored in the memory of the device you are using. Cookies are completely harmless and cannot contain any viruses. They enable certain information (browser type, language, country, identifier, etc.) to be recorded and retrieved by the server on subsequent visits. Under no circumstances do cookies allow visitors to be identified. The data remains completely anonymous and is used only to facilitate browsing and improve the WFH’s Websites and/or Platforms based on the needs of its visitors.
8.2	If you do not wish cookies to be used, your browser options can be configured to refuse and/or delete cookies. Please note that disabling or deleting cookies may deprive you of certain functions offered on our Websites and/or Platforms. In addition, this procedure must be repeated for each browser and computer used.
8.3	Google Analytics. We also gather information automatically about visits to our Websites and/or Platforms to help us maintain and improve its design, and to evaluate traffic statistics, such as the times of day and days of week at which we see peak traffic, and to assess the relative popularity of different areas of the Websites and/or Platforms. We use Google Analytics to gather this data and analyze it. Google Analytics collects information about the date and time in which our Websites and/or Platforms were accessed, and may also track a visitor’s movement within the site, but does not collect personal information about the visitor. You can install the Google Analytics Opt-out Browser Add-on to prevent information about your visits to our Websites and/or Platforms being sent to Google Analytics. Our web statistics software (Google Analytics) collects information about the date and time in which our Websites and/or Platforms were accessed, and we may also track a user’s movement within the Websites and/or Platforms. We use this data to improve our Websites and/or Platforms performance.
8.4	Meta Pixel. WFH also uses web beacons (“Pixels”) to analyze visitor activity to our Websites and/or Platforms. We use Meta Pixel to collect information about your interactions with our Websites and/or Platforms, such as pages visited, actions taken, buttons clicked and any pages visited as a result of the button clicks. Web beacons do not contain any personal information but may contain a unique identifier necessary for retargeting and targeted advertising. Meta Pixel allows us to measure the effectiveness of our advertising by understanding the actions you take on our Websites and/or Platforms. We use this data solely for analytical purposes to improve our services and deliver more relevant content.

9. RESPONSE TO JOB OFFERS

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

10. PROTECTION OF THE PRIVACY OF MINORS

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

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

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

12. SHARING PERSONAL INFORMATION OUTSIDE QUÉBEC

12.1 Your personal information is processed and stored in Québec. In order to carry out our mission, we may in some cases store, process and transfer your information around the world, including outside Québec or to jurisdictions outside your country of residence — if you are located in the Economic European Area or Switzerland, please review Appendix A "Additional terms" which apply to you in addition to the main terms of this Policy. Data may also be stored locally on the devices you use to access WFH Websites and/or Platforms.

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

13. HOW DO WE PROTECT YOUR PERSONAL INFORMATION?

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

14. RETENTION AND DESTRUCTION OF PERSONAL INFORMATION

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

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

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

16. WITHDRAWING YOUR CONSENT

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

17. CHANGES TO OUR PRIVACY POLICY

17.1 WFH will review and update its policies and procedures as required to keep current with rules and regulations, new technologies and standards. Our Privacy Policy may therefore change from time to time. We will post any Policy changes on our Websites and Platforms and, if the changes are significant, we will provide a more prominent notice. You are responsible for periodically visiting our Websites and/or Platforms and this Policy to check for any changes.

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

18. CONTACT DETAILS FOR THE PRIVACY OFFICER

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

APPENDIX A

APPENDIX A
ADDITIONAL TERMS FOR USERS LOCATED IN THE ECONOMIC EUROPEAN AREA (EEA) AND SWITZERLAND
If you are located in the European Economic Area (EEA) or Switzerland, these additional terms apply to you in addition to the main terms of WFH Privacy Policy. In case of a contradiction between the Privacy Policy and these additional terms, the latter will prevail.
1	LEGAL BASIS FOR PROCESSING PERSONAL INFORMATION UNDER THE GENERAL DATA PROTECTION REGULATION (GDPR)
1.1	If you are from the European Economic Area (EEA) or Switzerland, WFH’s legal basis for collecting and using the personal information described in this Privacy Policy depends on the personal information we collect and the specific context in which we collect it. We only process your Personal information if we have a legal basis to do so, which includes: Consent: where you have given us your consent, you have given us permission to do so, or where processing is necessary for the performance of a service you have requested; or Legitimate interests: for example, we may process your personal information to protect you, us, or others from threats (such as security threats or fraud), to comply with laws that apply to us.
If you have any questions about the lawful bases upon which we collect and use your personal data, please contact: Antonio José Almeida, WFH Senior Director, Operations and Privacy Officer by e-mail at [email protected] or at the following postal address: c/o Privacy Officer, World Federation of Hemophilia, 1184 rue Sainte-Catherine Ouest Suite 500, Montreal, Québec, H3B 1K1, Canada
2	TRANSFER OF YOUR PERSONAL INFORMATION OUTSIDE OF THE EEA OR SWITZERLAND
2.1	We may process information outside of the EEA or Switzerland, including Canada and the USA.
3	ADDITIONAL RIGHTS REGARDING YOUR PERSONAL INFORMATION UNDER THE GENERAL DATA PROTECTION REGULATION (GDPR)
3.1	If you are a resident of the European Economic Area (EEA) or Switzerland, you have certain data protection rights. WFH aims to take reasonable steps to allow you to correct, amend, delete or limit the use of your personal information.
3.2	If you wish to be informed about what personal information we hold about you and if you want it to be removed from our systems, please contact us.
3.3	In addition to the rights mentioned in the section 15 ("Accessing, correcting, de-indexing and portability of your personal information") and in section 16 ("Withdrawing your consent"), in certain circumstances, you also have the following data protection right: The right to delete the information we have on you. Whenever made possible, you can request deletion of your personal information, in which case we will carry out this request unless certain exceptional reasons arise permitting us to keep certain information about you; The right to object. You have the right to object to our processing of your personal information in certain circumstances, such as those described in the “Legitimate interests” section 1.1 b) above. We may however continue to process your personal Information unless your interests, rights and freedoms override our legitimate interests; and The right of restriction. You have the right to request that we restrict or limit the ways in which we process your personal information for instance where you believe your data is inaccurate. Please note that we may ask you to verify your identity before responding to such requests.

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

By using these websites and/or Platforms, you agree to its terms and conditions, effective as of the date you first use these websites and/or Platforms.
The World Federation of Hemophilia reserves the right to change these terms and conditions at any time by posting a modification notice online. Continued use of these websites and/or Platforms following the posting of changes constitutes your acceptance of these terms, as modified.
You agree to use these websites and/or Platforms only for lawful purposes and in a manner that does not infringe the rights of third parties or restrict or impede their enjoyment of use of this site.
These websites and/or Platforms and the information contained therein, names, images, photographs, and logos concerning or making reference to the World Federation of Hemophilia are provided “as is” without any additional representation or condition and without any implicit or explicit guarantee of any sort. Under no circumstance will the World Federation of Hemophilia be responsible for any damages, including, but not limited to, indirect damages, or any other damages caused by the use of or related to the loss of use of the websites and/or Platforms, whether by contract or negligence.
The World Federation of Hemophilia does not guarantee the site’s operations will not be interrupted and/or are exempt from error, or shortcomings will be corrected.
The World Federation of Hemophilia does not guarantee that the websites and/or Platforms or server will be free of viruses or bugs, or even its full functionality or the precision and exactness of its content.
Copyright restrictions:
- All information, photographs, graphics, and other material on these websites and/or Platforms are protected by copyright. While users of these websites and/or Platforms may use the content for personal, non-commercial use, none of the content of these websites and/or Platforms can be modified, translated, transferred or sold, copied, reproduced, published, or distributed, in whole or in part, without the prior written consent of the WFH.
- 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.

TRATAMIENTO Y ATENCIÓN

Herramienta de la FMH para la toma de decisiones compartidas en el tratamiento de la hemofilia

Iniciativa sobre mujeres y niñas con trastornos de la coagulación (MNTC)

Registro en línea de CFC

Declaraciones y recomendaciones

Guías de tratamiento

Tratamiento y atención

La FMH contribuye al establecimiento de normas de atención a escala mundial monitoreando problemas relacionados con la seguridad y el suministro de productos de tratamiento y notificando al respecto; convocando a reuniones internacionales de partes interesadas múltiples con el propósito de abordar desafíos para el acceso a terapias seguras y eficaces; y proporcionando a nuestra comunidad información actualizada y precisa relacionada con productos de tratamiento.

HERRAMIENTA DE LA FMH PARA LA TOMA DE DECISIONES COMPARTIDAS EN EL TRATAMIENTO DE LA HEMOFILIA

¿Qué es la toma de decisiones compartida?

La toma de decisiones compartidas (SDM por su sigla en inglés) es un proceso mediante el cual médicos y pacientes colaboran a fin de tomar decisiones basadas en pruebas médicas que equilibran riesgos y resultados esperados con preferencias y valores de los pacientes. Tomar decisiones compartidas ayuda a los pacientes a sentirse preparados en el proceso de toma de decisiones.

La Herramienta de la FMH para la toma de decisiones compartidas

La Herramienta de la FMH para la toma de decisiones compartidas es un sistema de apoyo interactivo para tomar decisiones, diseñado con el propósito de facilitar conversaciones sobre opciones de tratamiento entre personas con hemofilia (PCH) A o B y/o las personas que cuidan de ellas y su equipo de atención médica, lo cual conduce a tomar decisiones documentadas.

La Herramienta de la FMH para la toma de decisiones compartidas ofrece un marco de referencia a fin de orientar a las PCH a través del proceso de pensamiento relacionado con las metas y preferencias de tratamiento; proporciona información equilibrada y basada en pruebas sobre los resultados esperados por tipo de tratamiento; y ayuda a las PCH a sortear los complejos aspectos de las actuales opciones de tratamiento.

FUTURAS ACTUALIZACIONES

La Herramienta de la FMH para la toma de decisiones compartidas está disponible en alemán, español, francés, holandés, inglés y japonés, además de otros idiomas en el futuro. La Herramienta de la FMH para la toma de decisiones compartidas es una herramienta viva que se actualizará dos veces por año calendario con nuevas pruebas científicas. Las fechas de corte son el 30 de junio y el 31 de diciembre, y las actualizaciones tendrán lugar en los meses siguientes. Cualquier nueva prueba que surja después de estas fechas de corte se incluirá en la siguiente actualización.

Si desea obtener más información sobre la Herramienta de la FMH para la toma de decisiones compartidas escriba a [email protected].

DESEAMOS CONOCER SU OPINIÓN

Del 1^o de agosto al 1^o de noviembre de 2023 se abrirá un periodo de tres meses a fin de recibir comentarios del público interesado. Le animamos a participar en este importante proceso completando la encuesta sobre la Herramienta de la FMH para la toma de decisiones compartidas. ¡Agradeceremos que se tome algunos minutos para compartir su opinión con nosotros!

La Herramienta SDM de la FMH recibe apoyo financiero de:

¡Completa la encuesta!

INICIATIVA SOBRE MUJERES Y NIÑAS CON TRASTORNOS DE LA COAGULACIÓN (MNTC)

La Iniciativa sobre mujeres y niñas con trastornos de la coagulación (MNTC) está diseñada a fin de mejorar el diagnóstico y el acceso a la atención para todas las MNTC, así como para incrementar su reconocimiento y visibilidad dentro del conjunto de la comunidad de trastornos de la coagulación.

Esto se logrará mediante el desarrollo de la capacidad, la creación de conciencia, y la recolección de datos.

La necesidad

Actualmente, las mujeres y niñas solamente representan el 4.5% de las personas identificadas con hemofilia, y no la cifra esperada de 30%, dado que por cada varón con hemofilia hay 1.6 portadoras somáticas. Aproximadamente una de cada cinco mujeres que presentan periodos menstruales abundantes padece un trastorno de la coagulación subyacente. No obstante, el subdiagnóstico de un trastorno de la coagulación sigue siendo muy común. Esto es preocupante debido a que MNTC corren un mayor riesgo de padecer varios trastornos, entre ellos anemia, hemorragias durante el embarazo y otros tipos de problemas hemorrágicos. Asimismo, las mujeres y niñas enfrentan mayores barreras para la atención en general debido al estigma que rodea a la menstruación, los prejuicios de género y el sexismo. Todos estos factores contribuyen al hecho de que MNTC permanezcan sin recibir diagnóstico y atención, así como subrepresentadas en bases de datos médicas y de vigilancia.

Obtenga más información sobre los portadoras y mujeres con hemofilia

METAS DE LA INICIATIVA SOBRE MNTC

Los objetivos de la Iniciativa sobre MNTC son los siguientes:

Incrementar el acceso equitativo al diagnóstico y la atención para MNTC.
Incrementar la conciencia a escala mundial y fomentar la colaboración sobre temas relacionados con MNTC.
Aumentar la recolección de datos sobre MNTC

COMPONENTES DEL PROGRAMA

El Programa está conformado por tres componentes clave.

Desarrollo de la capacidad

El objetivo del componente de desarrollo de la capacidad es incrementar el acceso equitativo al diagnóstico y la atención para MNTC, mediante las siguientes acciones:

Incrementar los conocimientos de PAM sobre el tratamiento clínico integral de MNTC.
Incrementar la capacidad de las ONM para abogar por el derecho de MNTC a un acceso equitativo a la atención.
Aumentar los conocimientos de los profesionales de la salud y de las MNTC mediante el apoyo y el intercambio entre pares.

Esto se logrará mediante conferencias educativas, entre ellas la Cumbre mundial de la FMH sobre mujeres y niñas con trastornos de la coagulación, realizada de manera bianual, y sesiones de capacitación focalizadas, así como la preparación y diseminación de materiales educativos. Cada dos años también habrá disponibles oportunidades focalizadas para que MNTC continúen desarrollando su capacidad, a través del Programa de becas del fondo en memoria de Susan Skinner (FMSS).

Creación de conciencia

El objetivo del componente de creación de conciencia es incrementar el reconocimiento de MNTC mediante las siguientes acciones:

Mejorar las acciones globales de la FMH a fin de incrementar la conciencia sobre MNTC a escala mundial.
Fortalecer la colaboración entre la FMH, la sociedad civil y otras partes interesadas en apoyar a MNTC.
Fomentar la participación de MNTC en programas de la FMH.

Lo anterior se logrará mediante campañas de comunicación para subrayar las realidades que enfrentan MNTC, la colaboración con otras organizaciones, y la incorporación de las perspectivas de MNTC a los programas y herramientas de la FMH.

Recolección de datos

El componente de recolección de datos tiene como objetivo aumentar el acceso a los datos sobre MNTC mediante:

La mejora de la capacidad de recolección y notificación de datos sobre MTNC entre las ONM y los CTH y el aumento de los esfuerzos de recolección de datos de la FMH sobre MNTC.

Esto se logrará mediante la inclusión de preguntas adicionales relativas a las MNTC en la encuesta mundial anual de la FMH, la promoción de la inclusión de más mujeres y niñas en el El Registro Mundial de Trastornos de la Coagulación (RMTC), y el apoyo a la investigación y las publicaciones sobre MNTC.

Si desea obtener más información sobre MNTC haga clic aquí. Para obtener más información escriba a la FMH a [email protected].

LA INICIATIVA DE MNTC RECIBE APOYO FINANCIERO DE:

REGISTRO EN LÍNEA DE CFC

El Registro en línea de concentrados de factor de coagulación (CFC) ayuda al personal médico a identificar CFC disponibles y a mantenerse a la vanguardia de los cambios de las empresas farmacéuticas. La plataforma ofrece una gran variedad de datos actualizados y de fácil acceso que pueden utilizar profesionales de la salud, funcionarios, farmacéuticos y personas con trastornos de la coagulación a fin de documentar sus decisiones.

Plataforma de aprendizaje electrónico de la FMH

DECLARACIONES Y RECOMENDACIONES

Las declaraciones y recomendaciones de la FMH son avisos publicados por la FMH relacionados con cuestiones de seguridad, suministro y acceso al tratamiento en todo el mundo.

EXENCIÓN DE RESPONSABILIDAD

Estas declaraciones y recomendaciones se proporcionan exclusivamente con fines de información general. La FMH no participa en el ejercicio de la medicina, no proporciona asesoría médica y bajo ninguna circunstancia recomienda un tratamiento en particular para individuos específicos. Si desean obtener diagnóstico o tratamiento médico, la FMH recomienda que los pacientes consulten a su médico o al centro de tratamiento de hemofilia (CTH) de su localidad.

Declaraciones y recomendaciones más recientes

Joint WFH statement - WFH, National Bleeding Disorders Foundation (NBDF)

Declaración de la FMH y NBDF sobre el evento adverso grave ocurrido con marstacimab, agente reequilibrante para el tratamiento de la hemofilia

Pfizer informó a la Federación Mundial de Hemofilia (FMH) y a National Bleeding Disorders Foundation (NBDF) sobre un evento adverso grave ocurrido el 14 de diciembre pasado en una persona que recibía profilaxis con marstacimab (Hympavzi®) y que sufrió un accidente cerebrovascular trombótico mortal tras una cirugía menor. Esta persona, con hemofilia A e inhibidores activos, participaba en el programa de ensayos clínicos con marstacimab de Pfizer y había estado recibiendo dosis profilácticas de mantenimiento habituales de marstacimab (150 mg una vez a la semana) durante tres años. El evento trombótico ocurrió durante el estudio de ampliación abierto a largo plazo (OLE por su sigla en inglés). Pfizer está recopilando información de manera proactiva con el propósito de comprender mejor las causas del evento. Actualmente, las autoridades reguladoras no han aprobado el uso de marstacimab para el tratamiento de la hemofilia con inhibidores y este continúa en fase de investigación clínica.

Leer historia

Declaración de la FMH sobre recientes acontecimientos relativos a terapias para la hemofilia

A pesar de avances en la atención, las personas con hemofilia (PCH) aún enfrentan importantes desafíos en todo el mundo. La falta de acceso a la atención significa que dos tercios de la población mundial con hemofilia carece de tratamiento. Incluso en países con ingresos más elevados, el tratamiento representa una carga pesada y se presentan hemorragias intraterapéuticas. Si bien terapias recientes han abordado algunas necesidades fundamentales, y las terapias génicas comercializadas para la hemofilia han mostrado resultados alentadores, aunque variables, una cura permanece lejana para la mayoría de las PCH. La innovación continua es indispensable a fin de garantizar una mejor atención para la comunidad mundial de trastornos de la coagulación.

Leer historia

Takeda descontinuará los fármacos para la hemofilia HEMOFIL M y RECOMBINATE

Takeda anunció la descontinuación a escala mundial de sus tratamientos para la hemofilia A, HEMOFIL® M [factor antihemofílico (humano), método M, monoclonal, purificado] y RECOMBINATE (factor de coagulación VIII recombinante, octocog alfa).

Leer historia

Declaraciones y recomendaciones archivadas

Declaración de la FMH y NBDF sobre el evento adverso grave ocurrido con marstacimab, agente reequilibrante para el tratamiento de la hemofilia

Leer historia

Declaración de la FMH sobre recientes acontecimientos relativos a terapias para la hemofilia

Leer historia

Takeda descontinuará los fármacos para la hemofilia HEMOFIL M y RECOMBINATE

Leer historia

GUÍAS DE TRATAMIENTO

La FMH trabaja a fin de ofrecer a la comunidad mundial de trastornos de la coagulación las normas de atención basadas en pruebas científicas más actualizadas.

Guías para el tratamiento de la hemofilia

Esta 3ª edición de las Guías para el tratamiento de la hemofilia fue preparada por un panel internacional de proveedores de atención médica (PAM) expertos y de personas con hemofilia (PCH), y se publicó en agosto de 2020. El objetivo de la publicación es establecer la norma de atención a escala mundial y trabajar a fin de garantizar que todos los PAM y las PCH tengan acceso a las recomendaciones de tratamiento más recientes y actualizadas, lo cual, en última instancia, generará resultados de salud ideales para las PCH, disminuirá al máximo los daños, y reducirá las variaciones en la atención médica a escala mundial.

Las guías publicadas y los materiales de ellas derivados están disponibles en el Centro de recursos de las guías de tratamiento.

Guías para la EVW

Estas guías sobre el ejercicio de la medicina para el diagnóstico y el tratamiento de la enfermedad de Von Willebrand (EVW) se prepararon en colaboración con la Sociedad Estadounidense de Hematología (ASH por su sigla en inglés), con la Sociedad Internacional sobre Trombosis y Hemostasia (ISTH por su sigla en inglés) y con la Fundación Nacional de Hemofilia (NHF por su sigla en inglés), y se publicaron en 2021. Estas recomendaciones ofrecen orientación importante sobre profilaxis, cirugías mayores y menores, periodos menstrual abundantes y hemorragias posparto, umbrales diagnósticos, pruebas genéticas, y mucho más. Constituyen un valioso recurso para médicos y personas con EVW en el marco de la toma de decisiones compartidas sobre su atención individual. Constituyen, asimismo, una base sólida para labores de cabildeo esenciales a fin de mejorar el acceso en todos los países a las técnicas diagnósticas y a las opciones de tratamiento recomendadas en las guías.

Las guías publicadas y los materiales derivados pueden consultarse en línea en:

¿Sabía usted que…?

El objetivo del Programa de la Iniciativa sobre la EVW de la FMH es mejorar el diagnóstico y el tratamiento médico de la EVW e incrementar la conciencia acerca del trastorno entre comunidades médicas y legas.

Lea toda la historia

Eventos próximos

enero 2026
enero 29 @ 9:00 am - 10:00 am

Webinario de la FMH: Resolución de la Asamblea Mundial de la Salud: Acción mundial para promover la equidad en salud de personas con hemofilia y otros trastornos de la coagulación

La Federación Mundial de Hemofilia (FMH) tiene el gusto de invitarle a un webinario informativo respecto a los avances logrados con miras a la adopción de una resolución de la Asamblea Mundial de la Salud (AMS) sobre la hemofilia y otros trastornos de la coagulación.
abril 2026
abril 17

Día mundial de la hemofilia 2026

El 17 de abril de 2026, la comunidad mundial de trastornos de la coagulación hereditarios se reunirá con motivo del Día mundial de la hemofilia para abogar por todos los trastornos de la coagulación hereditarios. El tema de este año, El diagnóstico: primera etapa de la atención, destaca la importancia crucial del diagnóstico, el primer paso indispensable para el tratamiento y la atención.
abril 19 - abril 22

Congreso Mundial 2026 de la FMH

La Federación Mundial de Hemofilia (FMH) se complace en dar la bienvenida a la comunidad mundial de trastornos hemorrágicos al Congreso Mundial 2026 de la FMH en Kuala Lumpur, Malasia.

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.

Premios a los hermanamientos del año

2022	Ammán (Jordania) – Dublín (Irlanda)
2021	Addis Abeba (Etiopía) – Minneapolis (EE.UU.) y Teherán (Irán) – Milán (Italia)
2020	Aluva (India) – Newcastle (Reino Unido)
2019	Yogyakarta / Solo (Indonesia) – Utrecht (Países Bajos)
2018	Abidjan (Costa de Marfil) – Bruselas (Bélgica)
2017	Santa Cruz de la Sierra (Bolivia) – Buenos Aires (Argentina)
2016	Kampala (Uganda) – Londres (Reino Unido)
2015	Varna (Bulgaria) – Bonn (Alemania)
2014	Arequipa (Perú) – Los Ángeles (Estados Unidos)
2013	Davangere (India) – Liverpool (Reino Unido) Ludhiana (India) – Detroit (Estados Unidos)
2012	Hanói (Vietnam) – Melbourne (Australia)
2011	Manado (Indonesia) – Utrecht (Países Bajos)
2010	Delhi (India) – Winnipeg (Canadá) Yaoundé (Camerún) – Ginebra (Suiza)
2009	Chisinau (Moldovia) – Varsovia (Polonia) Colombo (Sri Lanka) – Vellore (India)
2008	Gaborone (Botswana) – Filadelfia (Estados Unidos)
2007	Vientiane (Laos) – Brest (Francia) Damasco (Siria) – Montpellier (Francia)
2006	Lima (Perú) – Fort Worth (Estados Unidos)
2005	Ereván (Armenia) – Minneapolis (Estados Unidos) Casablanca (Marruecos) – Caen (Francia)
2004	Beirut (Líbano) – Ginebra (Suiza) Santo Domingo (República Dominicana) – Caracas (Venezuela)
2003	El Cairo (Egipto) – Knoxville (Estados Unidos)
2002	Moscú (Rusia) – Liverpool (Reino Unido) Panamá – Valencia (España)
2001	Bangalore (India) – St. Louis (Estados Unidos)
2000	Pune (India) – Bradford (Reino Unido)
1999	Montevideo (Uruguay) – Buenos Aires (Argentina) Tianjin (China) – Calgary (Canadá)
1998	Plovdiv (Bulgaria) – Bonn (Alemania)
1997	Bogotá (Colombia) – Los Ángeles (Estados Unidos) Tartu (Estonia) – Estocolmo (Suecia)
1996	Timisoara (Rumanía) – Múnich (Alemania) Riga (Letonia) – Munster (Alemania)
1995	Klaipeda (Lituania) – Malmo (Suecia)
1994	Bratislava (Eslovaquia) – Tel Hashomer (Israel)

Premio Henri Horoszowski

2025	Shubhranshu S. Mohanty India	Haemophilic pseudotumour – New improvised classification system and its outcome in 168 cases at a Tertiary care centre
2021	Baolai Hua China	The effects of intra-articular injection of TNF-alpha Antagonists in treatment of haemophilic synovitis
2019	Maarten Eerdekens Bélgica	Asociación entre la cinética multisegmento del pie y el daño articular inducido por la sangre en pacientes adultos con artropatía hemofílica del tobillo
2017	Fabio Souza Brasil	Decrease in joint inflammation, swelling and pain after a swimming protocol in animal model of experimental-induced hemarthrosis
2015	SM Javd Mortazavi Irán	Bilateral total knee arthroplasty in patients with hemophilia: A safe and cost-effective procedure
2013	Lize F.D. van Vulpen Estados Unidos	Una proteína de fusión de IL4 e IL10 es igualmente eficaz para proteger el cartílago del daño inducido por la sangre en comparación con los componentes
2012	Horacio Caviglia Argentina	Cirugía de pseudotumor en pacientes con hemofilia A: resultados comparativos entre pacientes inhibidores y no inhibidores
2011	Nick Goddard Reino Unido y Monique van Meegeren Países Bajos	La administración temprana de IL-4 e IL-10 previene el daño del cartílago inducido por la sangre in vitro
2010	Lydia Abad-Franch España	Influencia de un protocolo de entrenamiento acuático en la reducción del riesgo de morbilidad y mortalidad cardiovascular en un hemofílico
2009	Sebastien Lobet Bélgica	Impacto de la artropatía del tobillo con hemofilia en la discapacidad de la marcha: análisis de variables energéticas y mecánicas
2008	Jose Alberto Tlacuilo-Parra México	Marcadores de rotación ósea y densidad mineral ósea en niños con hemofilia
2007	Natalie Jansen Países Bajos	Capacidades protectoras de la interleucina-10 en el daño del cartílago inducido por la sangre
2006	Axel Seuser y E. Kusch Alemania	Estudio multicéntrico del resultado ortopédico de las extremidades inferiores en 249 niños con hemofilia
2005	Frank van Genderen, Nico van Meeteren, Lily Heijnen, Piet de Kleijn, Marijke van den Berg, Paul Helders Países Bajos	Lista de actividades para la hemofilia: desarrollo final y validación de un cuestionario de autoevaluación específico para hemofilia sobre las capacidades funcionales
2004	Goris Roosendaal, Zalima N Jahangier, Kim MG Jacobs, Johannes WJ Bijlsma, Floris PJG Lafeber Países Bajos	La radiosinoviortesis con YTTRIUM-90 da como resultado efectos directos adversos sobre el cartílago: un estudio in vitro en humanos
2003	Axel Seuser, Thomas Wallny, Günter Schumpe, Elmar Trunz, Hans-Hermann Brackman Alemania	¿Cómo aconsejar a los jóvenes hemofílicos que encuentren el deporte adecuado? Un algoritmo nuevo y seguro
2002	James Luck, Jr. y Mauricio Silva Estados Unidos	Revisión a largo plazo de la artroplastia total de rodilla
2001	Federico Fernández-Palazzi Venezuela	Clorhidrato de oxitetraciclina: un nuevo material para las órtesis sinoviales químicas
2000	Horacio Caviglia Argentina	Pseudotumores
1999	William J. Ribbans y J.L. Hicks Reino Unido	Comunicación y cooperación para el nuevo milenio: el futuro del comité musculoesquelético en el siglo XXI
1998	Adolfo Llinas, Mauricio Silva, Monica Duarte, Gonzalo Ucros, Graciela Perini, Angela Maria Cerquera, Andres Forero Colombia	La sinoviortesis de fosfato crómico sin restricción de edad debería ser la primera opción de tratamiento para la sinovitis hemofílica activa crónica

2012	Piet de Kleijn Países Bajos
2010	Dr. Mammen Chandy India
2008	Dr. Man-Chiu Poon Canadá
2006	Dr. Norma de Bosch Venezuela
2004	Dr. Parttraporn Insarangkura Tailandia Dr. Carol K. Kasper Estados Unidos

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.

RESPONSES TO JOB OFFERS

10.

PROTECTION OF THE PRIVACY OF MINORS

11.

DO WE DISCLOSE YOUR PERSONAL INFORMATION TO THIRD PARTIES?

12.

SHARING PERSONAL INFORMATION OUTSIDE QUÉBEC

13.

HOW DO WE PROTECT YOUR PERSONAL INFORMATION?

14.

RETENTION AND DESTRUCTION OF PERSONAL INFORMATION

15.

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

16.

WITHDRAWING YOUR CONSENT

17.

CHANGES TO OUR PRIVACY POLICY

18.

CONTACT DETAILS FOR THE PRIVACY OFFICER

APPENDIX A

APPENDIX A

Condiciones de uso de las plataformas digitales de la FMH

Tratamiento y atención

HERRAMIENTA DE LA FMH PARA LA TOMA DE DECISIONES COMPARTIDAS EN EL TRATAMIENTO DE LA HEMOFILIA

¿Qué es la toma de decisiones compartida?

La Herramienta de la FMH para la toma de decisiones compartidas

FUTURAS ACTUALIZACIONES

DESEAMOS CONOCER SU OPINIÓN

La Herramienta SDM de la FMH recibe apoyo financiero de:

INICIATIVA SOBRE MUJERES Y NIÑAS CON TRASTORNOS DE LA COAGULACIÓN (MNTC)

La necesidad

METAS DE LA INICIATIVA SOBRE MNTC

COMPONENTES DEL PROGRAMA

LA INICIATIVA DE MNTC RECIBE APOYO FINANCIERO DE:

REGISTRO EN LÍNEA DE CFC

DECLARACIONES Y RECOMENDACIONES

EXENCIÓN DE RESPONSABILIDAD

Declaraciones y recomendaciones más recientes

Declaraciones y recomendaciones archivadas

GUÍAS DE TRATAMIENTO

Guías para el tratamiento de la hemofilia

Guías para la EVW

¿Sabía usted que…?

Eventos próximos

Manténgase informado(a)

WHO WE ARE

SUPPORT

OUR WORK

COLLABORATE

Disclaimer

Fraud Alert

Unauthorized solicitations – Warning

QUIÉNES SOMOS

APOYO

NUESTRA LABOR

COLABORE

Hemophilia Alliance

Hemophilia of Georgia

National Bleeding Disorders Foundation

Legacy Gift

Disclaimer