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2019 National Meeting Genespoir

From March 20th-22nd, 2019, Genespoir, the French Albinism association, held its annual national meeting in Strasbourg.

This year, Genespoir had chosen to hold its family conference and AGM in a venue near the European Parliament in Strasbourg. This weekend full of activities gathered more than 150 people, from babies to grand-parents coming from all over France.

A specific program was offered to children and teenagers with, among others, a cooking activity with Guillaume Jouan, chef and member of Genespoir, an introduction to goalball managed by the French goalball federation, albinism-oriented sessions ran by psychologists, as well as other games and fun activities.

The program for adults was quite intense as well, with several scientific presentations including a speech on mild forms of albinism given my Dr Duncombe-Poulet (co-author of a recent article entitled “ Mild form of oculocutaneous albinism type 1: phenotypic analysis of compound heterozygous patients with the R402Q variant of the TYR gene”). Different breakdown activities covered themes as varied as photophobia, genetic testing, low-vision simulation, benefits, visual development in babies, goalball, discussion groups and many more.

The program also included the viewing of two short films addressing different aspects of albinism:
- “Breaking Myths”, a 20-minute production resulting of a collaborative project of five European associations and featuring ten young adults with albinism in different and quite challenging activities.

- ¿Lo Ves? – 10 minutes of seeing the world through the eyes of Patty Bonet, a young Spanish woman with albinism

In 2020, Genespoir will celebrate its 25th anniversary. The candles will be blown during a special national meeting that will take place near Paris from May 21st – 24th.