During the last World Federation of Hemophilia (WFH) Annual Meeting of the General Assembly, the Rwanda Fraternity Against Hemophilia (RFH) was accredited as an associate national member organization (NMO)—bringing the total number of NMOs in the WFH family to 147.
Emmanuel Seromba is the President of the RFH—and also a father of two children with a bleeding disorder. He explains that in Rwanda, hemophilia has typically been an “unknown” disease, even for the patients themselves. “It has not been ten years since some doctors and healthcare professionals started to suspect cases and send the patients away for testing,” he says. In Rwanda, 90% of people with hemophilia and other inherited bleeding disorders have no access to treatment.
The Rwanda Fraternity Against Hemophilia (RFH) was created in 2014, but it was only in early 2020 that the patient organization was officially registered with the government. The RFH was created to promote the well-being of the members of the bleeding disorders community in Rwanda by facilitating access to treatment and care, participating in government advocacy, supporting patient identification-diagnosis, and working on enhancing the awareness of bleeding disorders in the country. The RFH has about 30 members, and as of 2021, a total of about 20 people with bleeding disorders have been identified in the country.
Seromba is optimistic about the future of his organization now that it has become a WFH NMO. “We are convinced that the WFH will be able to provide the necessary support to help us influence the decisions and the priorities of the Rwanda Ministry of Health,” he explains. The main challenges being faced by the patient organization include insufficient levels of education about bleeding disorders in Rwanda, and the lack of treatment products in the country—which are currently only available via WFH Humanitarian Aid Program donations.
The WFH is thankful to the Alliance franco-africaine pour le traitement de l’hémophilie (Afath) for the support they provided to the Rwanda Fraternity Against Hemophilia during their accreditation process. The WFH looks forward to continuing to collaborate with the RFH to get one step closer to our common vision of Treatment for All.
On behalf of the global bleeding disorders community, welcome, Rwanda Fraternity Against Hemophilia!