EDA - European Days of Albinism



The European Days of Albinism (EDA) is a unique international event dedicated to albinism. It is organized every two years by Albinism Europe, the network of European patient associations of albinism. The first edition of this conference was held in Paris (France) in October 2012.

The EDA is firstly a scientific conference gathering international experts of albinism, researchers, clinicians and other medical professionals. It is made of several consecutive sessions dedicated to the various medical aspects of the disease: dermatology, ophthalmology, neurology, genetics, biology, epidemiology, therapies,…

In parallel, the EDA is the frame of a meeting of representatives of European patient associations. It is an opportunity for them to exchange experience, share best practices, discuss and develop joint initiatives.

Each edition of the EDA ends with a joint session for both scientists and associations. It is a time made for the two communities to share the main conclusions of their work as well as exchange on best ways to collaborate.

The main goals of this conference series are:

  • to strengthen the international community of albinism,
  • to improve medical care for people with albinism,
  • to promote and facilitate collaborative research projects on albinism,
  • to facilitate exchange of best practices between medical professionals as well as patient associations,
  • to enable the development and implementation of joint projects for the patients associations such as the creation of a European federation of albinism.

Since its second edition, the European Days of Albinism host the YPA, a meeting of young European people with albinism coming from the different European associations represented. 

1st European Days of Albinism (1EDA) took place in Paris in 2012



2nd European Days of Albinism (2EDA) took place in Valencia in 2014



3rd European Day of Albinism  (3EDA) took place in Milan in 2016





YPA - meeting of Young People whith Albinism




Meeting of Young People with Albinism (YPA) is a meeting of boys and girls with albinism from across Europe, to give them the opportunity to meet, exchange on their personal experiences and initiate joint projects.  Meeting of Young People with Albinism (YPA) oftten take place on the same days of the EDA. but YPA has its own agenda, its own activities, etc.

The main goal of this meeting is to give the opportunity to young members of our associations to meet other young people with albinism from different European countries, share with them experiences and propose future joint projects. 

YPA gives a better environment for them to get to know each other and socialize during the days that will last the meeting. At last, we suggest that the young people attending this meeting would no younger than 18 and no older than 30 years old.

We believe that it is very important to give to our young people the best education and environment for them to become the future elite capable of taking on the challenges faced by our European collaboration in an increasingly globalized and complex society.

1st meeting of Young People whith Albinism took place in Valencia in 2014



2nd meeting of Young People whith Albinism took place in Milan in 2016