Bardet-Biedl Syndrome UK (BBS UK)
Helping those with BBS and their families and carers
Bardet-Biedl Syndrome UK (formally known as LMBBS) was established in 1993 and is the only registered charity supporting people with Bardet-Biedl Syndrome, their families and carers in the UK. Bardet-Biedl Syndrome (BBS) is a rare, recessively inherited genetic disorder affecting the cilia which affects approximately 1 in 100,000 babies born.
The aims of the charity 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 general public on the subject of BBS’.
Our long-established services have enabled us to continually support the needs of those at the heart of Bardet-Biedl Syndrome and as a direct result membership has more than trebled in the past two years. We now support over 550 people diagnosed with BBS, we also support their parents, carers and siblings as well as all the professionals involved in their care.
Bardet-Biedl Syndrome UK offers information, advice and support to adults and children with a rare genetic condition and their families and carers. Our vision is for all those with Bardet-Biedl Syndrome to understand their condition, to feel valued and supported to thrive and not to just survive.
Our Vision is to:
- Support parents and persons diagnosed with Bardet-Biedl Syndrome through diagnosis, health transitions and treatments.
- Support understanding and knowledge of the syndrome.
- Promote improved health, welfare and quality of life.
- Maintain and develop confidence and independence.
- Encourage and develop self-advocacy.
- Build on positive relationships and connections to reduce isolation.
BBS UK is a registered charity
President: Professor Philip Beales BSc LMSSA MD FRCP
Patron: Baroness Helena Kennedy of the Shaws Q.C
Chairman: Stefan Crocker