Genespoir from its creation wanted to be the spearhead of research on albinism. It was the only specific association for albinism of its kind, and quickly developed in Brittany, but also in France and from the second year organized itself at the national level by creating branches representing the association in the regions.
Impact Fund Project
The project consisted of an educational conference for families by dermatologists, ophthalmologists and geneticists. The event focused on sharing of experiences between parents in support groups; Discovery of sports activities adapted to a visually impaired public; Therapeutic education through play for young people aged 6 to 12; Activities for young people promoting autonomy; Presentation of books on albinism by their authors; Show on the theme of albinism; Friendly evenings.
We wanted to offer an interesting program and this requires a certain budget. It is very difficult to find sponsors, but equally important to maximum the number of people who can participate. Thanks to the Member Impact Fund we can have an interesting program and allow everyone to participate.
The Biggest Success of the Project in Our Patient Community
Following this event, a large number of participants decided to get involved in the operation of the association: participation of a new person on the board of directors; commitment of a person to represent the association in his region; engagement of a group of members in raising funds for research; participation of new members in the organization of the 2023 meeting.
"Very nice program overall. I really liked the moment of sharing books on albinism. Very successful evening. Many thanks to the organizers. How lucky to have had this quality event and right in our theme! These days were of a high level of excellence." - Participant
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