The EDA was created in 2012 by Genespoir, the French patient association for people with albinism, supported by the following scientific committee members:
- Robert Aquaron, Marseille, France
- Benoît Arveiler, Bordeaux, France
- Glen Jeffery, London, UK
- Barbara Käsmann-Kellner, Homburg, Germany
- Lluis Montoliu, Madrid, Spain
- Maria-Vittoria Schiaffino, Milan, Italy
- Alain Taïeb, Bordeaux, France