Who We Are…
The Bardet Biedl Syndrome Foundation is a registered 501(c)3 non-profit agency that connects families and shares information on research, treatment and therapies for Bardet Biedl Syndrome (BBS).
What began as a small network of families connecting through mailing lists and online forums has grown into a global community. BBSF hosts national and international conferences, funds critical research, and provides educational resources and support services. The foundation has secured major grants, including from Rhythm and the Chan Zuckerberg Initiative, to advance research and treatment, including efforts to kickstart gene therapy. Through community-building initiatives like virtual conferences, regional meetups, and a strong presence on social media, BBSF continues to lead the way in advocacy, awareness, and hope for those impacted by BBS.
Reach out for more info on how to get involved or get the latest updates.
What We Want…
The mission of the Bardet Biedl Syndrome Foundation (BBSF) is to advocate for, educate, and empower individuals and families affected by Bardet Biedl Syndrome. At its core, BBSF is committed to building a strong, informed community by connecting families and sharing up-to-date information on research, therapies, and care. Through advocacy efforts, educational outreach, and support programs, the foundation strives to ensure that every person impacted by BBS has access to the resources, knowledge, and community they need to navigate the challenges of the disorder with confidence and hope.