The « Williams-France » federation is formed of about ten local French associations that it 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 local 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 his insurance,
- Helping local associations to organise national meetings (the next will take place from 3 to 5 June 2016),
- 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),