Bardet Biedl Syndrome Foundation

The Bardet Biedl Syndrome Foundation, based in West Chester, PA, is a non-profit organization dedicated to providing resources and support for individuals and families affected by Bardet Biedl Syndrome (BBS), a rare genetic disorder. They offer a range of family resources, including a checklist, FAQs, and other helpful materials, as well as opportunities for involvement through fundraisers and events.

The foundation also aims to raise awareness about BBS and promote research by collaborating with organizations such as the Marshfield Clinic and the CRIBBS Registry. With a focus on connecting individuals and fostering a sense of community, the Bardet Biedl Syndrome Foundation is committed to making a positive impact in the lives of those affected by this syndrome.

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