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 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.
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
Our Advice Service is set up to provide information, advocacy and support across the areas of health, education and social care.
Our BBS Clinics Service enables us to provide the support needed throughout the BBS patient journey from the point of diagnosis onwards, which is vital for long term health and wellbeing.
Our annual family conference weekend brings members of the community together with interested professionals and experts to provide updates on the latest research and the opportunity to participate in tailored workshops.
Importantly, there it’s a safe space to connect and share advice and support with each other, the team at BBS UK, and invited relevant, external organisations.
Our groups enable people living with BBS to share their experiences in safe spaces and to build understanding around social, emotional, and health problems and the difficulties experienced day-to-day and within schools and work.
Our newsletters and conference reports provide up-to-date research, information, guidance, personal perspectives, and details of our projects and fundraising activities.
Our attendance at relevant seminars and conferences supports our work in raising awareness of BBS and the work of our charity and gives us the opportunity to learn from experts, share best practices and build our networks.
Our publications, including our Medical Booklet, Introducing BBS and Booklet for Schools and Colleges leaflets are available in various formats for accessibility. We hold a PIF tick, which means that our health information has been through a professional and robust production process.