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Bardet Biedl Syndrome Family Association

Connecting families and sharing information on research, treatment, and therapies for Bardet Biedl Syndrome.

BBS Weight Management Study

The BBS Family Association has partnered with the Marshfield Clinic to apply for a grant from the Patient Centered Outcomes Research Institute (PCORI) to study weight management in people affected by BBS. There is very little known about how people with BBS can effectively control their weight. Excess weight is a major contributor to illness in people with BBS and can be a barrier to enjoying life to the fullest for some.

PCORI was established by the US Congress as part of the Affordable Care Act. It funds research that addresses the questions and concerns most relevant to patients and caregivers. Certainly weight management in BBS is a major question and concern for many BBS families. Grants will be announced in April, but Dr. Haws and the Marshfield team are very optimistic that our proposal will make the cut. Stay tuned in the spring, as we hope to begin enrolling participants then.