Association Bardet-Biedl
Saint-Uze, France
About
Founded in 2004, Association Bardet-Biedl is a non-profit association based in Saint-Uze, France working on health, medical research.
French patient association supporting people affected by Bardet-Biedl syndrome, a rare inherited genetic disease, and their families. It provides information on the condition, runs peer support and networking events such as regional meetings and an annual general assembly, and funds and promotes research into the disease. The association is a French-speaking organisation working across mainland France and La Réunion, and is part of the international BBS federation.
Location
Founded
Organisation type
Legal form
Members
Focus areas
Languages
Causes & programmes
Causes
Works for
How they work
Programmes
COBBALT (Cohorte Bardet-Biedl et Alström Translationnelle)
Medical research · France
Clinical cohort collecting patient data, quality-of-life information and biological samples to better understand Bardet-Biedl syndrome and related conditions.
Programme de recherche sur la rétinopathie pigmentaire BBS
Medical research · France
Research programme developing gene therapy approaches, including viral vector and retinal organoid work, for retinal disease associated with Bardet-Biedl syndrome.
Countries of operation
Funding & support
Funded by
Ways to support
Trust
Credentials & affiliations
Industry memberships
Partnerships
Alliance Maladies Rares, SENSGENE, CARGO, Fondation Maladies Rares, Orphanet, BBS International, HelloAsso, Teaming, Facile2soutenir
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