Vanille-Fraise

Association Vanille-Fraise, also known as the French Sturge-Weber Association, is a French organization dedicated to raising awareness of Sturge-Weber syndrome, a rare and serious condition. Inspired by the experience of its daughter Julia, who lives with the syndrome, the association seeks to draw the attention of public authorities to the disease and support people affected by it and their families. Its aims include helping advance research, encouraging the search for the best treatments, and sharing the experiences and challenges of those living with the condition.

The association provides information through resources on Sturge-Weber syndrome, research developments, and related publications. It also offers a discussion forum and shares news, press coverage, and updates about its activities. To promote awareness and raise funds, Vanille-Fraise has organized or participated in events linked to Rare Disease Day, including the “Ronde de l’Espoir autour du macaron,” a raffle supporting its first research project call, and a darts tournament organized with local partners. The organization invites people to learn about its work and support its efforts.