The 4th EDA and 3rd YPA are co-organized by Albinism Europe and NFFA with the support of a Scientific Committee, which is made of international experts on albinism.

Albinism Europe

Albinism Europe is a network of European associations of patients with albinism.

Our objectives are:

  • to collaborate in spreading proper and correct information on albinism and the best available treatments
  • to support and inspire research by creating scientific interest on albinism and associated conditions and connecting professionals both at local and international level
  • to promote the development of national and international guidelines on albinism
  • to encourage people affected by albinism to create associations in other countries

Currently, nine associations are taking part in this initiative with a view to becoming an official federation in the near future.

Discover more about Albinism Europe. Visit our website at


NFFA is the Norwegian albinism organization. It was founded in 1994. In 2016, the association had 210 members, including people with albinism and their families.

The association allows its members to share experiences. It provides them with support and information on albinism. The NFFA magazine Lysluggen is published about 4 times a year and is a major link between the members. Every year in the middle of March, NFFA helds its annual meeting. This gathering is a very popular event among the association members. It’s the best opportunity for them to socialize, learn and share their life experiences.

To find out more about NFFA, please visit our website (in Norwegian only):


Scientific Committee

  • Benoit Arveiler (CHU, Bordeaux, France) – co-chair
  • Lluis Montoliu (CNB-CSIC and CIBERER-ISCIII, Madrid, Spain) – co-chair
  • Brian Brooks (National Eye Institute, NIH, Bethesda, MD, USA)
  • Maria Mies van Genderen (Bartimeus, Diagnostic Centre for Rare Visual Disorders, Zeist, The Netherlands)
  • Irene Gottlob (University of Leicester, UK)
  • Karen Gronskov (Kennedy Center, Clinical Genetics, Copenhagen, Denmark)
  • Michael Hoffmann (University Eye Clinic, Magdeburg, Germany)
  • Barbara Kaesmann-Kellner (University Eye Clinic, Homburg, Germany)
  • Alessandra Del Longo (Niguarda Hospital, Milano, Italy)
  • Michael Marks (Children’s Hospital of Philadelphia and UPENN, Philadelphia, PA, USA)
  • Fanny Morice-Picard (CHU, Bordeaux, France)
  • Maria Vittoria Schiaffino (San Raffaele, Milano, Italy)
  • Maria Jose Trujillo (FJD Hospital, Madrid, Spain)

The 4th EDA scientific committee is also the permanent scientific committee of Albinism Europe. Learn more about each of the committee members on this page.