Bardet-Biedl Syndrome UK is the only registered charity supporting people with Bardet-Biedl Syndrome (BBS), their families and carers in the UK. We are a user led organisation, represented by adults with BBS and parents of children with BBS.

We support over 640 people diagnosed with BBS and their families; along with professionals involved in all aspects of the care and support of people with BBS in the UK.

Our vision is for people with Bardet-Biedl Syndrome to understand their condition, to feel valued and to thrive.