The 5th EDA and 4th YPA are co-organized by Albinism Europe and Genespoir 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 people 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, ten 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 www.albinism.eu.

Genespoir

Genespoir was created in 1995 in Rennes, France, by Fabienne Jouan, a mother of three children, two of them having oculocutaneous albinism. Today, it is the only French non-profit organization specific to albinism.

The association has over 350 members: adults and children with albinism, parents and relatives of children with albinism, friends and acquaintances. Several of these members live outside France, in the francophone regions of Belgium and Switzerland, as well as in Luxemburg.

Genespoir informs the families as well as the general public and the medical professionals about albinism and its consequences: diagnosis, skin protection, visual aids, social, scholar and professional inclusion… The association provides families psychological assistance and informs people with albinism on their rights.

Genespoir actively promotes scientific research on albinism. It collects donations from private citizens and organizes fundraising events in order to provide financial support to research programs.

Genespoir acts so the French public health care system takes charge of treatments.

Likewise, it represents and defends the interests of every person with albinism and devotes significant attention to break the isolation barrier of people with albinism thanks to the organization of exchanges between the members of the association.

To find out more about Genespoir, please visit our website (in French only): www.genespoir.org

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 Jose Trujillo (FJD Hospital, Madrid, Spain)

The 5th EDA scientific committee is also the permanent scientific committee of Albinism Europe. Learn more about each of the committee members on this page.