The « Williams-France » federation (facebook.com/federationwilliamsfrance) groups about ten regional French associations and brings together about 450 families affected by the Williams syndrome.
This organisation allows families to share their experiences (medical, social, legal …) in relation to the syndrome. Williams France’s website (http://www.williams-france.org/) shares common information and any significant nationwide news and events regarding the Williams syndrome in France. Global contact details are also available for any help, enquiries, or for anyone wishing to get in touch with a regional association.
Most importantly, the role of the federation is to represent the Williams syndrome community in the country and enable nationwide / high-impact actions, such as:
- Creating and updating a brochure explaining the syndrome,
- Covering all events by its insurance,
- Helping regional associations to organise national meetings,
- Creating a scientific body,
- Being a member of the “Alliance Maladies Rares” (Rare Diseases Alliance),
- Encouraging summer camps for the affected people (hosted the 5th FEWS camp in 2009),
- Etc…
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Christian CastillonChristian is the father of a 23-year-old young man. He began by getting involved in his regional association (in south-eastern France) twenty years ago, where he was Chairman for five years. Then he entered the office of the French federation where he continues to serve as Vice-Chairman. Christian represents Williams-France in the FEWS. |