Happily Henry

What is BBS?

Bardet Biedl Syndrome is a rare genetic disorder with highly variable symptoms which may include retinal degeneration, obesity, reduced kidney function, polydactyly (extra digits of the hands or feet) among many other features. While there are more than 20 genes associated with BBS, the underlying cause regardless of gene is malfunction of primary cilia, a key component of cellular communication. BBS is thus categorized as a ciliopathy, or a disease of the cilia. Click the link below to find out more.

The Marshfield Clinic

Dr Haws and his team at the Marshfield Clinic are doing so much to help this rare syndrome and have big plans and dreams for the future of the clinic. Having a child diagnosed with a rare syndrome is overwhelming and scary but having a place to go where you know your child will receive the best care and be loved is priceless! The research they are doing can save lives and greatly improve the quality of life for these sweet kiddos. We love the Marshfield Clinic and all that they do! More about Marshfield:

Marshfield Clinic Health System, gifts from people like you support unique, pioneering research and care for patients and families living with Bardet-Biedl Syndrome. Your donations support:

– The only comprehensive BBS clinic in North America.

– The Clinical Registry Investigating Bardet-Biedl Syndrome (CRIBBS), offering long-term research insights into BBS health challenges. CRIBBS enrollment to date is over 500 individuals from over 30 countries.

– Multi-specialty three to four-day clinics for children and adults with BBS.

– The only center in the world conducting a clinical trial examining a drug to treat excessive hunger in BBS. 

– Low-vision adaptive program to help patients with limited sight.

The Center of Excellence for BBS is growing to empower more patients living with BBS to live independently. This 5-year, $10 million project can only happen with your support! Add your donation today to give BBS patients the help they need now and hope for the future.