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

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

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

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

5.	HOW DO WE COLLECT YOUR CONSENT?
5.1	The WFH considers you to have validly consented to the collection, use or disclosure of your personal information if (i) you give your express written or oral consent; (ii) you voluntarily provide personal information for an obvious purpose; or (iii) if you do not object to the collection, use or disclosure of personal information by the WFH within a reasonable time after the WFH has given you clear notice, including through this Policy, of its intention to do so and the intended purposes.
5.2	In some cases, the WFH may collect personal information about an individual without their consent in accordance with the Acts or any other law or regulation that permits doing so.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

NOTICIAS RECIENTES

Visite la página de Noticias de la FMH para saber más sobre los eventos y acontecimientos que marcan la diferencia actualmente.

Published abril 21, 2024

2024 Congress Daily evening edition: Sunday, April 21

Good evening! Here’s a quick wrap-up of some key events that took place today. We look forward to welcoming you to the official first day of the WFH 2024 World Congress tomorrow.

También disponible en: English Français

2024 Annual Meeting of the General Assembly held

The WFH 2024 Annual Meeting of the General Assembly was held today in Madrid, Spain, as part of the WFH 2024 World Congress. The meeting featured reports given by WFH board members and was attended by WFH national member organizations (NMOs). During today’s meeting, Cesar Garrido was voted as president for a second four-year term; Mathieu Jackson and Ekawat Suwantaroj were voted as lay board members; and Miguel Escobar and Alok Srivastava were voted as medical board members. Benin and Rwanda became full NMOs; and Burundi, The Democratic Republic of Congo, Gabon, Guinea, and Sierra Leone became associate NMOs. This brings the total number of NMOs in the WFH family to 152. Read the full article on the 2024 Annual Meeting of the General Assembly here.

WFH 2028 World Congress and WFH 2025 Comprehensive Care Summit locations announced

Today, at the WFH 2024 Annual Meeting of the General Assembly, Chicago was chosen as the location of the WFH 2028 World Congress in North America. Congratulations to all those who were involved in the bidding process!

During the opening ceremony today, the location of the WFH 2025 Comprehensive Care Summit was announced. We are happy to share with you that the next summit will take place in Dubai, U.A.E. next year.

Two volunteers honoured with WFH awards

During the Opening Plenary today, the WFH honoured two of our most dedicated volunteers. Former WFH Board member and Chair of the Youth Committee, Deon York, received the International Frank Schnabel Volunteer Award in recognition of his contributions to training and advocacy work globally. Jan Willem Andre de la Porte—former WFH Patron—was presented with the International Lifetime Achievement Award, honouring his exemplary leadership, compassion, and commitment to youth within the bleeding disorders community. Congratulations to our remarkable winners! Click here to find out more about WFH awards.

SOA and Book of Abstracts published online

The State of the Art Book and the Book of Abstracts have both been officially released by Haemophilia—the official journal of the WFH. Click on an image below to start reading!

WFH leverages collaboration in Cambodia to support community

Early this year, the WFH Humanitarian Aid Program team went to Cambodia to see first-hand what progress has been made in the country thanks to support provided by the WFH. They saw very quickly that care has improved significantly since the WFH first started working in the country 15 years ago. Read the article here. Find out more about the Program by attending the Presentation Theatre session taking place on Monday at 11:00.

Session: WFH Humanitarian Aid Program: celebrating 10 years of partnerships and achievements
Time: 11:00 to 11:20
Location: Presentation Theatre, Exhibit Hall 9

Poster gallery and exhibit hall open tomorrow

We’re sure that you have a busy day planned for day 1 of Congress, but don’t forget to take a moment to visit the exhibit hall and the poster gallery, both of which open at 10:30. The exhibit hall will feature the bleeding disorders organizations and the industry companies that work at the heart of the inherited bleeding disorders community. The gallery will feature hundreds of posters showcasing the latest research in our field today.

La sustentabilidad durante el Congreso

The WFH is taking steps to ensure that Congress is a sustainable event by hiring vendors with sustainability initiatives, providing a carbon emission offset tool, making water fountains available in the exhibit hall (to reduce the need for bottled water) and reducing the quantity of printed material distributed at the event.

Program at a glance for tomorrow

Lastest News

mayo 6, 2024

Premios de la FMH entregados durante su Congreso Mundial 2024

A la Federación Mundial de Hemofilia (FMH) y a sus organizaciones nacionales miembros (ONM) las impulsan personas comprometidas, convencidas de que juntas pueden lograr un futuro mejor para quienes viven con un trastorno de la coagulación en todo el mundo. Los premios de la FMH son un reconocimiento para estas personas que han dedicado su tiempo a apoyar nuestra visión compartida de Tratamiento para todos. ...

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diciembre 15, 2023

¡Ya se publicó el programa del Congreso Mundial 2024 de la FMH! El Congreso de este año incluirá más de noventa horas de sesiones educativas, que abordarán temas médicos y de personas con trastornos de la coagulación (PCTC) e incluirán seis segmentos de desarrollo profesional. Puede dar un vistazo al…

Congreso Mundial 2024 de la FMH: Madrid, la vibrante capital de España

noviembre 24, 2023

La Federación Mundial de Hemofilia (FMH) y la Federación Española de Hemofilia (Fedhemo) tienen el gusto de dar la bienvenida a la comunidad mundial de trastornos de la coagulación al Congreso Mundial 2024 de la FMH que tendrá lugar en Madrid, España, del 21 al 24 de abril del año…

Se amplía la fecha límite para presentar propuestas de resúmenes

noviembre 16, 2023

Excelentes noticias para los investigadores que desean exponer su trabajo al mundo: la fecha límite a fin de presentar a consideración propuestas de resúmenes para el Congreso Mundial 2024 de la FMH se amplía hasta el 30 de noviembre de 2023, a las 11:59 p. m. ET….

Le extendemos una invitación oficial al Congreso Mundial 2024 de la FMH

octubre 16, 2023

A nombre de César Garrido, presidente de la Federación Mundial de Hemofilia (FMH), y de Daniel Aníbal García Diego, presidente de la Federación Española de Hemofilia (Fedhemo), le extendemos una invitación oficial al Congreso Mundial 2024 de la FMH que tendrá lugar en Madrid, España, del 21 al 24 de…

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

septiembre 22, 2023

Ya se abrieron oficialmente las inscripciones y el alojamiento para el Congreso Mundial 2024 de la FMH que tendrá lugar en Madrid, España, del 21 al 24 de abril. Nuestras competitivas cuotas de inscripción y múltiples opciones hoteleras facilitarán que usted participe en lo que será el mayor evento para…

¡La convocatoria para someter a consideración resúmenes para el Congreso Mundial 2024 de la FMH se abrirá pronto!

septiembre 6, 2023

El año próximo, la Federación Mundial de Hemofilia (FMH) y la Federación Española de Hemofilia (Fedhemo) auspiciarán el Congreso Mundial 2024 de la FMH en Madrid, España, del 21 al 24 de abril. Este evento será la reunión más completa del año en nuestro campo, con más de 90 horas…

Conozca más acerca del Congreso Mundial 2024 de la FMH

julio 26, 2023

El próximo será un año importante para la comunidad mundial de trastornos de la coagulación, ya que la Federación Mundial de Hemofilia (FMH) y la Federación Española de Hemofilia (Fedhemo) auspiciarán el Congreso Mundial 2024 de la FMH en Madrid, España, del 21 al 24 de abril. El evento será…

¡Marque su calendario! El Congreso Mundial 2024 de la FMH llegará a Madrid el próximo año

mayo 11, 2023

La Federación Mundial de Hemofilia (FMH) y La Federación Española de Hemofilia (Fedhemo) se complacen en dar la bienvenida a la comunidad mundial de trastornos de la coagulación al Congreso Mundial 2024 de la FMH que se llevará a cabo en Madrid, España, el próximo año, del 21 al 24…

El Congreso Mundial 2024 de la FMH tendrá lugar en Madrid

noviembre 18, 2022

El día de hoy, durante una reunión extraordinaria de la asamblea general (AG) de la Federación Mundial de Hemofilia (FMH), se decidió el lugar en el que tendrá lugar el Congreso Mundial 2024 de la FMH. Tenemos el gusto de anunciar que Madrid, España, fue seleccionada como la ciudad para…

La FMH convocará a una reunión especial de su Asamblea General

septiembre 26, 2022

Durante los últimos dos años, la pandemia de COVID-19 ha incidido de manera importante en la comunidad de trastornos de la coagulación, causando incluso la cancelación o postergación de eventos. Debido a estos cambios, ahora se hace necesario que la Federación Mundial de Hemofilia (FMH) convoque a una reunión especial…

Nueva ONM asociada: Safe Motherhood and Hemophilia Foundation The Gambia

julio 5, 2022

El 7 de mayo de 2022, durante la reunión anual de la Asamblea General de la Federación Mundial de Hemofilia (FMH), la asociación Safe Motherhood and Hemophilia Foundation The Gambia (SMHF por su sigla en inglés) fue bienvenida como organización nacional miembro (ONM) asociada de la FMH. La SMHF es…

Ya está disponible el acceso gratuito al contenido A pedido del Congreso 2022

junio 13, 2022

El Congreso Mundial 2022 de la FMH fue un éxito rotundo, con miles de asistentes de 145 países, quienes participaron tanto en persona, en Montreal, como de manera virtual. La FMH ahora tiene el gusto de ofrecerle acceso gratuito al contenido A pedido del evento….

Ekawat Suwantaroj cooptado al Consejo Directivo de la FMH

mayo 31, 2022

La Federación Mundial de Hemofilia (FMH) tiene el gusto de anunciar que Ekawat Suwantaroj ha sido cooptado como miembro lego del Consejo Directivo de la FMH, a partir del 26 de mayo de 2022 y hasta la próxima reunión anual de la Asamblea General de la FMH en 2024….

General Plenary: VP Medical address with Glenn Pierce

mayo 12, 2022

At the WFH 2022 World Congress in Montreal, Canada, Glenn Pierce, MD, PhD, Vice President Medical at the World Federation of Hemophilia (WFH), gave his plenary address, “Looking Forward with the View of Learnings of the Past”. In his presentation, Pierce addressed where we are, and where we need to…

Humanitarian Aid, A path to sustainable care

mayo 12, 2022

The WFH 2022 World Congress concluded today in Montreal. Many guests gathered for the farewell dinner in a comfortable setting that reflected the positive feeling and sense of camaraderie that was present for the whole Congress….

The challenge of evaluating and managing pain

mayo 11, 2022

Today, the session “The challenge of evaluating and managing pain” was given at the WFH 2022 World Congress. The event was chaired by Barbara Konkle, Research Director and Professor of Medicine at the Washington Center for Bleeding Disorders, U.S.A., and World Federation of Hemophilia medical board member….

We are looking forward to seeing you in Buenos Aires and Kuala Lumpur!

mayo 11, 2022

On behalf of everyone at the WFH, thank you for being part of the WFH 2022 World Congress in Montreal, Canada….

Don’t forget to drop by the WFH Resource Centre

mayo 11, 2022

WFH Humanitarian Aid Program officially signs new contract with CSL Behring

mayo 11, 2022

In April, the WFH and WFH USA announced a new WFH Humanitarian Aid Program partnership with CSL Behring which included a donation of 500 million IUs of factor VIII in addition to the original 3-year commitment of 17 million IUs per year of factor VIII and IX….

Congress Daily Recap – Day 2

mayo 11, 2022

Magdy El Ekiaby receives 2022 WFH International Healthcare Volunteer Award

mayo 11, 2022

Every two years, the World Federation of Hemophilia (WFH) recognizes the outstanding volunteers who generously share their time, expertise, and energy with the global bleeding disorders community. Their contributions help drive our progress towards the WFH vision of Treatment for All….

Today at the WFH 2022 World Congress – May 11

mayo 11, 2022

Welcome to day 4 of the WFH 2022 World Congress. Here are a few “must see” sessions we have curated for you today….

Hemophilia gene therapy: update on new country initiatives

mayo 10, 2022

Today, “Hemophilia gene therapy: update on new country initiatives” was held at the WFH 2022 World Congress in Montreal, Canada. The talk was chaired by Alok Srivastava, Professor at the Department of Hematology – Christian Medical College, Vellore, India, and covered gene therapy developments at the country level. Gene therapy…

Free paper session: Oral health

mayo 10, 2022

The WFH 2022 World Congress in Montreal, Canada today held a session called “Free paper session: Oral health”….

Memorial art: remembering the past, changing the future

mayo 10, 2022

What role does the memorialization of tragedy play in healing? What roles do story-based memorials offer that names-based memorials can’t? Some of these questions were explored today at the WFH 2022 World Congress….

Perspectives on curing hemophilia

mayo 10, 2022

“Perspectives on curing hemophilia” was held at the WFH 2022 World Congress in Montreal, Canada….

Plenary: Gene therapy – are we ready now?

mayo 10, 2022

Hemophilia therapy has evolved from rudimentary transfusion-based approaches to an unprecedented level of innovation with the potential of a functional cure brought by gene therapy….

Congress Daily Recap – Day 1

mayo 10, 2022

Roche extends commitment to WFH Humanitarian Aid Program

mayo 10, 2022

The World Federation of Hemophilia (WFH) and WFH USA are pleased to announce that Roche will extend its commitment to the WFH Humanitarian Aid Program until the end of 2028….

Humanitarian Aid, A path to sustainable care

mayo 10, 2022

At the WFH 2022 World Congress in Montreal, Canada, the many successes of the WFH Humanitarian Aid Program were covered in the session, “Humanitarian Aid, A path to sustainable care”. The event was chaired by Glenn Pierce, MD, PhD, Vice President Medical, World Federation of Hemophilia (U.S.A)….

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

mayo 10, 2022

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

Today at the WFH 2022 World Congress – May 10

mayo 10, 2022

Welcome to day 3 of the WFH 2022 World Congress. Here are a few “must see” sessions we have curated for you today. To read full program, please click here….

Health issues in women and girls affected by hemophilia

mayo 9, 2022

The session, “Health issues in women and girls affected by hemophilia with a focus on nomenclature, heavy menstrual bleeding, and musculoskeletal issues” was held today at the WFH 2022 World Congress in Montreal, Canada. Chaired by Roseline d’Oiron, Director at the Reference Centre for Haemophilia and Congenital Bleeding Disorders, University…

Changing treatment, changes diagnosis

mayo 9, 2022

Today, “Changing treatment, changes diagnosis” was held at the WFH 2022 World Congress in Montreal, Canada….

Susan Skinner Memorial Fund Scholarship empowers women—you’re invited!

mayo 9, 2022

Despite the uncertainties leading up to the WFH 2022 World Congress, the 2022 Susan Skinner Memorial Fund Scholarship (SSMF) recipients have still been able to connect in person….

Young Researchers free paper sessions – part 1

mayo 9, 2022

Today, “Young Researchers free paper sessions – Part 1” was held at the WFH 2022 World Congress in Montreal, Canada. The talk was chaired by Johnny Mahlangu, Professor at the University of the Witwatersrand and NHLS, Johannesburg, South Africa….

WFH President Cesar Garrido delivers plenary talk at Congress

mayo 9, 2022

Today at the WFH 2022 World Congress in Montreal, Canada, WFH President Cesar Garrido delivered his plenary to participants and the greater global bleeding disorders community….

Nurul Islam receives 2022 WFH President’s Award

mayo 9, 2022

Every two years, the World Federation of Hemophilia (WFH) recognizes the outstanding volunteers who generously share their time, expertise, and energy with the global bleeding disorders community. Their contributions drive our progress towards the WFH vision of Treatment for All….

Introducing the myWBDR mobile app: a new WBDR data collection tool

mayo 9, 2022

There’s a new data collection tool that people with hemophilia (PWH) can use with the WFH World Bleeding Disorders Registry (WBDR)!…

Don’t miss: women’s networking event

mayo 9, 2022

Today at the WFH 2022 World Congress – May 9

mayo 9, 2022

Welcome to day 2 of the WFH 2022 World Congress. Here are a few “must see” sessions we have curated for you today. To read full program, please click here….

Community comes together at opening ceremony

mayo 8, 2022

Michael Soucie receives 2022 WFH International Lifetime Achievement Award

mayo 8, 2022

Every two years, the World Federation of Hemophilia (WFH) recognizes the outstanding volunteers who generously share their time, expertise, and energy with the global bleeding disorders community. Their contributions drive our progress towards the WFH vision of Treatment for All….

Bradley Rayner receives 2022 WFH International Frank Schnabel Volunteer Award

mayo 8, 2022

Every two years, the World Federation of Hemophilia (WFH) recognizes the outstanding volunteers who generously share their time, expertise, and energy with the global bleeding disorders community. Their contributions drive our progress towards the WFH vision of Treatment for All….

PROGRAM CHANGES: WFH 2022 World Congress

mayo 8, 2022

Please note that there have been changes to the program for the WFH 2022 World Congress….

Celebrating 50 years of the IHTC Fellowship Program

mayo 8, 2022

Live demonstrations of WFH resources in exhibition hall

mayo 8, 2022

Live demonstrations of WFH Data Collection platforms and our enhanced eLearning Platform are taking place at the WFH Resource Centre in the exhibition hall!…

Today at the WFH 2022 World Congress – May 8

mayo 8, 2022

Welcome to day 1 of the WFH 2022 World Congress. Here are a few “must see” sessions we have curated for you today. To read full program, please click here….

Elección de cargos durante la Asamblea General de la Reunión Anual 2022 de la FMH

mayo 7, 2022

La Asamblea general de la Reunión Anual 2022 de la Federación Mundial de Hemofilia (FMH) se realizó hoy en Montreal, Canadá. Varios cargos se reafirmaron con la reelección de sus titulares; se votaron nuevos miembros del consejo; y diversas organizaciones nacionales miembros (ONM) se unieron a la familia de la…

¡ÚLTIMA OPORTUNIDAD PARA INSCRIBIRSE COMO PARTICIPANTE VIRTUAL AL CONGRESO MUNDIAL 2022 DE LA FMH!

mayo 4, 2022

Todavía hay tiempo para inscribirse como participante virtual al Congreso Mundial 2022 de la FMH y disfrutar de sesiones y contenido selectos desde la comodidad de su hogar u oficina….

CONGRESO MUNDIAL 2022 DE LA FMH – ¡Se agota el tiempo!

abril 29, 2022

Las inscripciones en línea para el componente en persona del Congreso Mundial 2022 de la FMH estarán abiertas hasta la media noche del domingo 1o de mayo, Horario del Este (EST)….

Congreso Mundial 2022 de la FMH – ¡Ya está disponible el programa final!

abril 20, 2022

¡Ya está disponible el programa final del Congreso Mundial 2022 de la FMH! Conozca todas las sesiones que ofrecemos este año en nuestros Programa de un vistazo y Horario de un vistazo….

Congreso Mundial 2022 de la FMH: ¡No se pierda las sesiones!

abril 8, 2022

¡Ya falta poco para el Congreso Mundial 2022 de la FMH! El mes próximo –del 8 al 11 de mayo de 2022– el formato híbrido del congreso le ofrecerá los avances médicos y multidisciplinarios más recientes en nuestro campo. Las siguientes son cinco sesiones que no deberá perderse en mayo…

Congreso Mundial 2022 de la FMH – ¡Actualizaciones más recientes!

abril 7, 2022

¡Las restricciones impuestas debido a la pandemia de COVID-19 se están eliminando en todo Canadá! A partir de este momento, el pasaporte de vacunación ya no es necesario en Quebec. A partir del 1o de abril de 2022, ya no habrá requisitos de pruebas previas a su llegada para las…

Congreso Mundial 2022 de la FMH: ¡El formato híbrido cuenta con una opción para todos!

marzo 24, 2022

El Congreso Mundial 2022 de la FMH se llevará a cabo como evento híbrido, permitiendo a los delegados participar en persona, en el Centro de convenciones de Montreal, o en línea a través de la plataforma virtual….

¡Aproveche la tarifa de inscripción temprana y ahorre hoy!

marzo 8, 2022

¡Inscríbase al Congreso Mundial 2022 de la FMH antes del 11 de marzo de 2022 y ahorre hasta un 20% en cuotas de inscripción!…

El Congreso Mundial 2022 de la FMH tendrá lugar en mayo de 2022, como estaba previsto

febrero 22, 2022

Alrededor del mundo, las restricciones por la pandemia de COVID-19 se están relajando, y Montreal no es la excepción. Salones de congresos, restaurantes y otros establecimientos reabren plenamente y los viajes se facilitarán a partir de marzo. En muchos países, el relajamiento de las restricciones continuará durante las próximas semanas….

Ya está abierta la convocatoria para enviar resúmenes sobre novedades muy recientes

febrero 15, 2022

¡El Congreso Mundial 2022 de la FMH –un importante evento para la comunidad internacional de trastornos de la coagulación este año– está a la vuelta de la esquina! La FMH tiene el gusto de anunciar que ya está abierta la convocatoria para enviar resúmenes sobre novedades muy recientes….

Presente su arte conmemorativo durante el Congreso Mundial 2022 de la FMH

enero 13, 2022

El arte conmemorativo –utilizado para honrar y recordar a personas fallecidas debido a una tragedia– se expresa de muchas maneras. Ejemplos conocidos son el Proyecto NOMBRES (NAMES Project), el cubrecama de retazos en recuerdo del sida (AIDS Memorial Quilt), y el monumento en honor a los veteranos de Vietnam….

El programa en una ojeada: Congreso Mundial 2022 de la FMH

diciembre 15, 2021

Conforme se acerca el final del año 2021, la Federación Mundial de Hemofilia (FMH) y la Sociedad Canadiense de Hemofilia (CHS por su sigla en inglés) se preparan para llevar a usted el Congreso Mundial 2022 de la FMH, del 8 al 11 de mayo de 2022….

¡Ya está próxima la fecha límite para presentar resúmenes!

noviembre 19, 2021

Todavía está a tiempo de presentar su resumen para el Congreso Mundial 2022 de la Federación Mundial de Hemofilia que tendrá lugar en Montreal, Canadá, el año próximo. La fecha para presentar resúmenes es el 22 de noviembre de 2021, a las 11:59 p. m. Horario del Este (ET). Las…

Montreal: Lista para auspiciar el Congreso Mundial 2022 de la FMH

octubre 28, 2021

El año entrante, la Federación Mundial de Hemofilia (FMH) y la Sociedad Canadiense de Hemofilia (CHS por su sigla en inglés) darán la bienvenida a la comunidad mundial de trastornos de la coagulación a Montreal, Canadá, con motivo del Congreso Mundial 2022 de la FMH, que tendrá lugar del 8…

¡Ya está abierta la inscripción al Congreso Mundial 2022 de la FMH y comienza la recepción de resúmenes!

septiembre 28, 2021

La FMH y se complace en invitarlo formalmente al Congreso Mundial 2022 de la FMH, ¡el primer gran evento híbrido de la comunidad de trastornos de la coagulación! Ya está abierta la inscripción y también la convocatoria para presentar resúmenes….

Montreal dará la bienvenida al Congreso mundial 2022 de la FMH

agosto 11, 2021

La Federación Mundial de Hemofilia (FMH) y la Sociedad Canadiense de Hemofilia (CHS por su sigla en inglés) tienen el gusto de dar la bienvenida a la comunidad mundial de trastornos de la coagulación al Congreso mundial 2022 de la FMH, el cual se realizará de manera híbrida por primera…

Amanda Brito del Pino: Entrevista con una receptora de las becas del Fondo en memoria de Susan Skinner

julio 17, 2018

Amanda Brito del Pino es una de las receptoras de la beca del FMSS en 2018. Le hicimos algunas preguntas sobre lo que para ella implica recibir una beca del FMSS….

Jeanne White-Ginder: mother of Ryan White

julio 6, 2016

Hear the Ryan White Story as told by his mother, Jeanne White-Ginder. Ryan was a boy living with hemophilia and diagnosed with AIDS following a transfusion of tainted clotting factor in December 1984….

We’ve accomplished a lot this year, we need your help to continue strong.

Would you like to read more about similar articles?

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

2024 Congress Daily evening edition: Sunday, April 21

2024 Annual Meeting of the General Assembly held

WFH 2028 World Congress and WFH 2025 Comprehensive Care Summit locations announced

Two volunteers honoured with WFH awards

SOA and Book of Abstracts published online

WFH leverages collaboration in Cambodia to support community

Poster gallery and exhibit hall open tomorrow

La sustentabilidad durante el Congreso

Program at a glance for tomorrow

Premios de la FMH entregados durante su Congreso Mundial 2024

WFH 2024 World Congress concludes on high note

2024 Congress Daily morning edition: Tuesday, April 23

Se realizó la Reunión Anual 2024 de la Asamblea General de la FMH

2024 Congress Daily morning edition: Sunday, April 21

El Congreso Mundial 2024 está a la vuelta de la esquina

Nuevas sesiones de artículos libres agregadas al programa del Congreso

Amplíe sus horizontes con los talleres gratuitos del Congreso Mundial 2024 de la FMH

Las 5 principales razones para asistir al Congreso Mundial 2024 de la FMH

Congreso Mundial 2024 de la FMH: ¡No se pierda a los ponentes!

Conozca más acerca del Congreso Mundial 2024 de la FMH

Congreso Mundial 2024 de la FMH: Madrid, la vibrante capital de España

Se amplía la fecha límite para presentar propuestas de resúmenes

Le extendemos una invitación oficial al Congreso Mundial 2024 de la FMH

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

¡La convocatoria para someter a consideración resúmenes para el Congreso Mundial 2024 de la FMH se abrirá pronto!

Conozca más acerca del Congreso Mundial 2024 de la FMH

¡Marque su calendario! El Congreso Mundial 2024 de la FMH llegará a Madrid el próximo año

El Congreso Mundial 2024 de la FMH tendrá lugar en Madrid

La FMH convocará a una reunión especial de su Asamblea General

Nueva ONM asociada: Safe Motherhood and Hemophilia Foundation The Gambia

Ya está disponible el acceso gratuito al contenido A pedido del Congreso 2022

Ekawat Suwantaroj cooptado al Consejo Directivo de la FMH

General Plenary: VP Medical address with Glenn Pierce

Humanitarian Aid, A path to sustainable care

The challenge of evaluating and managing pain

We are looking forward to seeing you in Buenos Aires and Kuala Lumpur!

Don’t forget to drop by the WFH Resource Centre

WFH Humanitarian Aid Program officially signs new contract with CSL Behring

Congress Daily Recap – Day 2