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 1400 people which include those diagnosed, their parents, carers, siblings and we communicate with over 250 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.
Conference Group Photo


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 Get Involved Donations page for details of how you can help.

Cancellation of BBS UK Weekend Family Conference– 17th-19th April 2020, Hilton Hotel, Northampton

It is with the greatest of sadness that BBS UK have had to cancel the Weekend Family Conference in Northampton in April; as disappointing as this is, it is our only option to ensure the safety of our community.

Please call the Hilton Hotel, Northampton to cancel your room booking without penalty: 01604 700666 (any time over the coming week will be fine). If BBS UK was arranging your accommodation, we will now cancel those bookings and you do not have to do anything.

BBS UK will refund all deposits paid, however if additional expenses have been incurred, please do contact us as soon as possible:, likewise if you have any concerns or questions.

Together we will make sure that Conference 2021 is the biggest and best ever and we will also start planning other activities and events to look forward to once we are through this challenging and worrying time...

Our Support
The work of the Charity is never more obvious or appreciated than when going through the difficulties of diagnosis. We are here to support you.
News & Events
Get up to date news on our events, including the BBS UK activity weekends for young people and adults with BBS and their families.
Your fundraising support will help make sure we can continue our vital work to support those diagnosed with BBS.


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