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

124028349_3720045754693393_5408552213213

Véronique HELOIR
Presidente

DUB départ_Francis3.jpg

Francis LESTEL
Vice-President

femme-profil-png-5.png

Patricia Dawn HATCHER
Secretary

GREGORY.jpg

Grégory BOUETEL
Treasurer

Contact US

Thank you for your sending !

Bardet-Biedl Syndrome International
3 route des Essarts
26240 SAINT-UZE
FRANCE

  • Facebook
  • Twitter
  • Instagram