25th Birthday of the French Rett Syndrome Association


By Martine Gaudy

During three days, from 18th 20th May, the French Rett Syndrome Association celebrated their 25th Anniversary. Over 320 people, including 65 girls, gathered in Nantes for this beautiful event. This was an exceptional get together, as grandparents had been specially invited for this occasion, together with parents of course, siblings, and friends.

A presentation with the latest news on research and clinical trials on RTT was given by Doctor Laurent Villard from Marseilles and a talk on the management of pain for multi-disabled people was given by Doctor Marine Letellier. Other events were workshops on genetics, support groups for grandparents and for siblings. During the lectures, the girls were cared for by volunteers and they had a fantastic music therapy session (see picture). Several rooms were also specially dedicated to the girls, with activities to suit their mood: movie sessions or rest.

Special workshops were also organized to help parents with their girls when they were back at home: hydration workshops with delicious recipes for soups and smoothies were demonstrated, sensory and psychomotor games, beauty care, dog therapy….

Over 400 families are adherent to the French Rett Syndrome Association, representing more than half of the RTT population in France. The association in very active in promoting research and care. The association is fortunate to be helped by the best RTT specialists in France who come from the scientific, medical and educational board of the Association.

25th Birthday of the French Rett Syndrome Association
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