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 Global Day is October 4th!
Join us for BBS Global Day on October 4th, when BBS organizations around the world will gather for a webinar to share the exciting progress for the global BBS family. This webinar will feature researchers, doctors and BBS leaders from across the globe, including. Dr. Phil Beales (UK), Dr. Arlene Drack (US), Dr. Diana Valverde (Spain), Dr. Martina Huranova (Czech Republic), Dr. Mieke van Haelst (Netherlands) and more.
You can register for the webinar here:
https://us02web.zoom.us/.../181.../WN_Wi1TU3QMTsSxxNZDS-qqtg
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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.
