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While the World Federation of Hemophilia (WFH) 2022 World Congress may be over, those that had the opportunity to attend the event will be able to share the knowledge they gained with their peers and patients for years to come. Cindy Bailey, Junior Vice-Chair of the WFH Musculoskeletal Committee, was one of a handful of individuals to receive the Hemophilia Alliance Travel Fund grant to take part in the WFH 2022 World Congress in person. “To be able to discuss topics with other providers immediately after a lecture gives the content more meaning,” said Bailey. “Reviewing the new information in this way with peers makes it easier to retain and incorporate it into your thought process for future patient care.”
A key focus area of the WFH Humanitarian Program is outreach and identification—particularly for younger people with bleeding disorders (PWBDs). A child who is diagnosed early can get access to care early, and potentially, prophylactic treatment. The WFH estimates that over 75% of the estimated 815,000 people with hemophilia worldwide are undiagnosed (based on 2021 global population). Early diagnosis means early treatment—and a chance at a more normal life.
The WFH is happy to announce the 2021 Twins of the Year! The 2021 Hemophilia Organization Twinning (HOT) Program Twins of the Year are Palestine-Venezuela, and the 2021 Hemophilia Treatment Centre Twinning (HTC) Program Twins of the Year award is shared by Addis Ababa (Ethiopia)-Minneapolis (U.S.A) and Tehran (Iran)-Milan (Italy).
In 2018, the WFH launched the World Bleeding Disorders Registry (WBDR), providing HTCs with a simple solution to collect data. The WBDR is designed to collect standardized clinical data on people with hemophilia from a large network of hemophilia treatment centres (HTC) all around the globe. The WFH is happy to announce that 10,000 people with hemophilia (PWH)—and counting—have taken part in the WBDR, and, in doing so, have played an important part in improving patient care worldwide.
The WFH Humanitarian Aid Program collaborates with national member organizations (NMOs) and hemophilia treatment centres (HTCs) to understand their country-specific needs and help them provide predictable and sustainable treatment to the people in their communities. In Guyana, the NMO has been developing closer links with medical facilities in the past several years, which has had a positive impact on PWBDs in the South American country.
La 5ª Mesa redonda de la FMH sobre terapia génica reunirá a organizaciones nacionales miembros (ONM) de la FMH, defensores de pacientes, profesionales de la salud, encargados de la reglamentación, y representantes de la industria a fin de abordar acontecimientos mundiales actuales y desafíos esperados en relación con la terapia génica para la hemofilia. La asistencia a este evento es exclusivamente por invitación.
Cette 5e Table ronde sur la thérapie génique rassemblera des organisations nationales membres (ONM) de la FMH, des patients experts, des professionnels de santé, des régulateurs et des représentants de l’industrie pharmaceutique afin de discuter des dernières évolutions en cours dans le monde et des difficultés escomptées en matière de thérapie génique dans le domaine de l’hémophilie. Cette réunion est accessible uniquement sur invitation.
The 5th Gene Therapy Round Table (GTRT) will bring together WFH national member organizations (NMOs), patient advocates, health care professionals, regulators and industry representatives to discuss current global developments and expected challenges related to gene therapy for hemophilia. This event is by-invitation only.

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

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

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

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