The World Federation of Hemophilia (WFH) Annual Meeting of the General Assembly saw many new faces join the WFH. It also saw Alain Weill complete his second and final mandate as President of the WFH. Weill’s dedication and passion have been clearly felt through the last eight years. His leadership has played a key factor in enabling the WFH to continue to expand its impact worldwide through new and continuing endeavours.
Providing support to developing nations has always been a topic that is close to Weill’s heart. The WFH Humanitarian Aid Program was one of the first projects that he became involved with. He helped that program expand its reach significantly—including playing an instrumental role in encouraging sponsors to significantly increase donation volumes. He was also able to work with industry leaders to sign new pharmaceutical companies to the program and secure strong commitments from them in terms of both donations and financial investment. Weill also led the development of the WFH Africa Summit, a conference designed to look at the current state of the bleeding disorders community in Africa, with the goal of sharing learnings, building connections, and developing a realistic action plan for moving forward. That event is now in its third year.
The successful launch of the World Bleeding Disorders Registry (WBDR) is due in no small part to Weill’s commitment and initiative. The WBDR provides a platform for a network of hemophilia treatment centres (HTCs) around the world to collect uniform and standardized patient data and guide clinical practice. It has been enormously successful, with over 6,000 patients enrolled already. One important recent accomplishment for the endeavour: the WBDR completed a data linkage proof of concept study, where data from an HTC in the Czech Republic was directly integrated into the WBDR.