Events
Check out our Family Fundraisers!
Regional Gatherings
Stay tuned for more information about our 2025 Regional Gatherings!
We are currently searching for volunteers to help us lead and organize these impactful events. Interested? Learn more!
2025 Strategy Summit
recap
In March 2025, the Bardet Biedl Syndrome Foundation held a landmark Strategy Summit, bringing together individuals with BBS, families, researchers, and international partners to shape a bold new direction for the Foundation. Key priorities include transitioning to a professionally staffed organization, expanding support for individuals and families, strengthening research and clinical collaboration, and enhancing global outreach. These efforts aim to amplify the global BBS voice, foster collaboration, and drive meaningful progress in care, research, and community support.
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
Interested in starting your own fundraiser for the Bardet Biedl Syndrome Family Association?