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.
2025 Regional Gatherings
We’re thrilled to share that planning is now in motion for the 2025 BBSF Regional Gatherings! These special events offer a valuable chance for individuals and families impacted by Bardet-Biedl Syndrome to connect, share stories, and form meaningful bonds as a community.
These gatherings offer a unique opportunity for individuals and families affected by Bardet-Biedl Syndrome to connect locally, share experiences, and build lasting community support. Stay tuned for dates, locations, and registration details—we can’t wait to see you there!
Based on current feedback, we plan to host events in Orlando, Chicago, Philadelphia, Ohio, Oklahoma City, and in the Pacific Northwest.
Please FILL OUT THIS INTEREST FORM to let us know where you are, which conference you’re interested in attending, and where else in the country we can bring the BBS community together!
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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.
