About BBSUK
Bardet-Biedl Syndrome UK was originally established in 1993 as LMBBS and 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 700 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.
We want 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 positive relationships and connections to reduce isolation.
What we do
- Advice Service: Provides information, advocacy, and support across health, education, and social care.
- BBS Clinics Service: Offers tailored support throughout the BBS patient journey, from diagnosis onwards, helping to safeguard long-term health and wellbeing.
- Conference Weekend: Brings together members of the BBS community, professionals, and experts. The event shares the latest research, delivers tailored workshops, and—most importantly—creates a safe and supportive space to connect, exchange advice, and engage with BBS UK and relevant external organisations.
- Service User Groups: Provide people living with BBS the opportunity to share their experiences, influence the work of BBS UK, and build wider understanding of the impact of living with the syndrome.
- Information Booklets: Produced in accessible formats to meet diverse needs. We hold the 'PIF Tick', which demonstrates that our health information meets rigorous professional standards.
- Newsletters / Conference Reports: Provide up-to-date research, guidance, personal perspectives, and details of our projects and fundraising activities.
- Networking, Exhibiting, Collaboration: Raises awareness of BBS and the work of BBS UK, while enabling us to learn from experts, sharing best practice, and strengthening our networks.
