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

Our aims are ‘to preserve and protect the health and promote the welfare of persons who have BBS and to advance the education of the medical and educational professionals and the public about BBS’.

We support over 640 people diagnosed with BBS, their parents, carers, and siblings as well as professionals involved in all aspects of the care and support of people with BBS in the UK.

Further information can be found at www.bbsuk.org.uk