BARDET-BIEDL Syndrome International
Connecting people affected by the syndrome of Bardet-Biedl worldwide
About BBS FOUNDATION
BBS International is a federation that will enable us to collaborate together on a global scale, to unite efforts, to collect and publish information on the disease, to increase network cooperation, to improve research by avoiding unnecessary duplication.
Created on 03 October 2020 by 5 countries (France, USA, UK, Italy, Netherlands). Members are active national patient organisations representing patients and their families affected by BBS. Together, they are the voice of approximately 40,000 patients worldwide.
« Bardet-Biedl syndrome is a rare disease, but many of you around the world are affected by it or one or more of your children. The announcement of such a diagnosis is hard and one can feel quite alone. Many countries in the world do not have a national association or the information to better understand the disease. This is also why the Federation was created, to break the isolation and answer your questions. You are not alone ! »
Join the community and get to know each other !
Our TEAM
Véronique HELOIR
Presidente
Francis LESTEL
Vice-President
Patricia Dawn HATCHER
Secretary
Grégory BOUETEL
Treasurer