On October 16, 2020, during the World Federation of Hemophilia (WFH) Annual Meeting of the General Assembly, the Kosovo Hemophilia Foundation (KOHA F) was accredited as an associate national member organization (NMO), bringing the total number of WFH NMOs to 147 worldwide.
The Kosovo Hemophilia Foundation (KOHA F) began as a very personal project. It’s founder—and current president—Elmedina Kukaj, watched her younger brother suffering with hemophilia as he grew up. That experience steeled in her a determination to help people with hemophilia (PWH) in her country. Always searching out resources to help her better understand the condition, she found the WFH Facebook page in 2018 and decided to contact us. “I got a reply from the WFH Regional Manager for Europe within two days,” she explains, impressed. A few days later she had a call—and it was then that the idea of forming a patient group and preparing it for accreditation by the WFH was put in motion.
In the beginning, the major challenge for Kukaj was simply finding other patients. It was difficult because people in Kosovo feel afraid and even embarrassed to say they have a bleeding disorder. Eventually, she began working with a couple whose son has hemophilia, and, together, they established the Kosovo Hemophilia Foundation with the support of some healthcare professionals. Currently KOHA F is led by a board of directors comprised of lay and medical members.
Kukaj believes that partnering with the WFH will help her brother and the members of the bleeding disorder community in Kosovo live a more normal life, “My brother had a very difficult time. There was no treatment available for months and he had to leave school. I want him and the bleeding disorder community in Kosovo to understand that they are not different from us. They need to understand that they can live normal lives working and going to school.”
Kukaj was delighted when the KOHA F was officially recognized as a WFH Associate NMO at the WFH General Assembly. She said she immediately called all the doctors and everyone who helped them establish the organization to share the good news. Now that the organization is accredited, she wants to focus on the next steps, which include the establishment of a hemophilia treatment centre (HTC) and a patient registry.
The WFH looks forward to working with the Kosovo Hemophilia Foundation to build better access to care and treatment for the bleeding disorder community in Kosovo.