Syndrome de Barth

Syndrome de Barth France is an association supporting people and families affected by Barth syndrome, a serious genetic disease that can be life-threatening. Affiliated with the US-based Barth Syndrome Foundation and connected with partner associations in Italy, the United Kingdom, Canada and South Africa, it is part of an international community of families, healthcare professionals, researchers, donors and volunteers.

The association works to raise awareness of the disease among medical professionals, researchers and the public, and to support international medical research through funding. It also promotes education and information about care for affected families, bringing available resources together in one place. Its website offers information on symptoms, practical guidance, medical research and explanatory publications, alongside news, blog articles, events, photos and videos. Visitors can learn about the association’s patron, consult annual reports, subscribe to its newsletter, make donations and visit its shop.

By connecting families and care teams and encouraging collaboration across borders, Syndrome de Barth France aims to improve the lives of children and families affected by the disease and support the search for a treatment.