Over the next several months, Alain Baumann will be hosting question & answer sessions with World Federation of Hemophilia (WFH) leaders. Today we hear the thoughts and opinions of Alain Weill, President of the WFH, France. Alain Weill was elected president of the WFH following the WFH 2012 World Congress. He was re-elected for another four-year presidential term during the 2016 Annual Meeting of the WFH General Assembly.
Alain lives in France and has extensive professional experience in management and business in an international environment. Now retired, he worked for over 30 years with Air France where Alain was chief of staff to the chief executive. He has experienced many different cultures, and has lived in India, the United Kingdom, Belgium, and the Netherlands. Alain first encountered hemophilia when his son was diagnosed with severe hemophilia A. He became involved with the French Hemophilia Association and was elected as a board member in 2006.
Alain served as an elected member of the steering committee of the European Haemophilia Consortium (EHC), and was selected by the European Commission to represent patients on the European Union Committee of Experts on Rare Diseases (EUCERD).
How did you get involved with the World Federation of Hemophilia (WFH)?
I started working with the WFH while preparing for the WFH 2012 World Congress in Paris, France. There I had the opportunity to meet with some volunteers who suggested that I run for the position of President of the WFH.
What makes you proud to be part of the WFH?
While reaching our goal of Treatment for All goal is still far away, I see regular progress being made every day. This is thanks to our hard-working team in Montreal, and our large network of committed volunteers throughout the world, both medical and lay.
What do you think is the main impact the WFH has had in recent years?
Thanks to the large volume of treatment product donations, the WFH Humanitarian Aid Program has been able to enable the implementation of a low-dose prophylaxis regimen for young children in many developing countries.
What is the main impact you hope the WFH will have in the future?
I hope that we will succeed in convincing all stakeholders—and, in particular, governments—that buying clotting factor concentrate (CFC) is not a cost, but rather, first and foremost, an investment in their country.
What do you think is one area where the WFH could improve?
I think the WFH could improve the way it works with patients with VWD and patients with inhibitors. These two groups have historically had a lower profile than other bleeding disorder groups, and I think that’s an area we should work on and definitely improve.
Next to your involvement with the WFH Board, what is your personal involvement in the bleeding disorders community in your country or region?
I am a member (ex-officio) of the European Haemophilia Consortium steering committee, and a member of the Rare Diseases International advisory board. I am also a member of the advisory committee that the French Hemophilia Society has set up to implement the AFATH (Alliance franco-Africaine pour le traitement de l’hémophilie) project.
If you had $1 million to donate to the bleeding disorders community, where would you like to see your donation go?
I would invest in research to make diagnosis easier, cheaper, and more accessible to populations living outside the reach of a hemophilia treatment centre.
To read about how other WFH leaders answered these questions, please click here.