28th French Rett Syndrome Association family weekend

For the 28th time, the Rett Syndrome French Association (AFSR) organised their family weekend days which took place in the “Center Parcs” of Sologne from 3 till 6 of June.

361 attended the weekend, 90 families, 83 Rett girls and 1 Rett boy.

The families stayed in nice cottages surrounded by trees and had the opportunity to use all the facilities of the Parc: swimming pools, horse riding, foot-pedal boating, …The main restaurant of the resort was reserved only for the Rett families.

Saturday morning was dedicated to the associations annual general assembly.

Then, Dr Laurent Villard presented a short review on the history of Rett syndrome and the progression made during the last 50 years. Dr Villard explained in a very clear way the trials that are currently done, the risk of runnning too many trials at the same time and the importance of international databases.

The second conference in the morning was on the social rights for the french families

In the afternoon different topics were presented: Genetics and mutations, Orthopedic surgery and respiratory management and Trials in Rett syndrome

On Sunday there was more time left to ask questions to the researchers.

Parents could also try out different eye-gaing systems from Tobii or have a massage course with their child.

The AFSR funded the making of a youtube demonstration of this massage course especially adapted to Rett patients. It is available here:

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