-
Bardet-Biedl syndrome to understand their condition, to
feel valued and supported to thrive and not to just survive.Our vision is for all those with
- is a rare, recessively inherited ciliopathy which
affects approximately 1 in 100,000 babies bornBardet-Biedl Syndrome
- in a number of ways and we have a range of
opportunities for volunteers to get involved inYou can volunteer for BBS UK
*Important Announcement*
The BBS UK Annual General Meeting is taking place via video call on 28th September 2020 between 10:30 - 11:30am. All members of the BBS UK CIO are invited to attend.
For more information click on the link below or contact the BBS UK Office Manager liz.loughery@bbsuk.org.uk / 07421 312 731.
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.
For information regarding the clinical features of BBS, please look at our Bardet Biedl Syndrome page.
There are no membership fees and no charges are made for information - the work of the Charity relies entirely on donations. Please look at our Donate page for details of how you can help.
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