Because unity is strength, it is essential that families come together to share and exchange, and to help researchers working on the syndrome to continue and deepen their work.
We want to gather the largest number of families, relative and friends of families. Membership in the Association is mandatory to create a community that shares the same values and goals. The subscription ranges from 15 to 250 euros: each gives according to his financial means. The contributions will serve the operational activities of the non-profit Association composed by a board of volunteers.