Videos: Self Management of Rare Conditions
Managing Laurence Moon Bardet Biedl Syndrome
Allan Clark shares his story of raising two sons with Bardet Biedl Syndrome, a condition that affects 1 in between 70-100,000 people:
Tel: 01633 718415
The Society is a Registered Charity in England and Wales No. 1027384, established in 1987. It offers support and advice and contact with other families where possible. Activities include raising awareness of the condition, an annual family conference and fundraising. It publishes a regular newsletter and has information available. The Society works closely with medical professionals and is involved in a number of specialist clinics around the country. It represents over 200 families.