Our Mission:
Advocate. Educate. Empower.
Connecting families and sharing information on research, therapies, and care for Bardet Biedl Syndrome.
Family Resources
The Bardet Biedl Syndrome Foundation is dedicated to improving the lives of individuals and families affected by BBS. Our mission is to build a community of support for individuals and families, provide information about BBS, and promote science and research to improve the lives of individuals with Bardet Biedl Syndrome.
RECENTLY DIAGNOSED? Hear directly from the BBS community — read real stories, listen to interviews, and discover what’s possible. Explore BBS Stories here.
UPCOMING EVENTS
BBS Conference 2026: Washington DC
Registration for our Family Conference is now open! Please join us in Washington, D.C., July 31-August 1 as we connect with and learn from other BBS families, hear from leading experts about cutting edge research on BBS, and ask questions of doctors and specialists who have experience treating many people with BBS.
You can find out all the information you need here:
Stay Up to Date
Sign up with your email address to receive news and updates
on how to get involved and the latest research.
Our Impact to Support Research & Advocacy.
Great strides have been made toward improving the lives of families affected by Bardet Biedl Syndrome through information, support and by advancing research and therapy in the last decade. The syndrome is accurately and promptly diagnosed much more often; the genetics of the syndrome have been deeply explored; and progress is being made in understanding the molecular basis of symptoms and in possible treatment for retinal degeneration.
12+
$1.2m+
$750k+
Make a Donation
Donations to the Bardet Biedl Syndrome Foundation will support research into treatment and care
for people affected by BBS as well as education and outreach to families, physicians, and educators.
