Telephone: 07591 206787 (Amy Clapp BBS UK Support Officer: Birmingham Service)
Bardet-Biedl Syndrome UK is the only registered charity supporting people with Bardet-Biedl Syndrome, their families and carers. The aims of the Charity, according to its constitution, are: to preserve and protect the health and promote the welfare of persons living with BBS, and to advance the education of the medical and educational professionals and the general public on the subject of BBS.
For information regarding the clinical features of BBS, click here for our information booklets.
All members of the Management Committee are volunteers. They have children with BBS or have the syndrome themselves, and they willingly give up their time to provide support, raise funds and generally do as much as they can to keep the Charity moving forwards.
The Charity produces newsletters, conference reports, holds an annual family conference, and is an integral member of the specially commissioned multi-disciplinary BBS Clinics. Awareness of the Syndrome has grown massively as a result and the Charity now supports over 500 families and communicates with over 130 professionals involved in their care.
There are no membership fees and no charges are made for information – the work of the Charity relies entirely on donations.
Registered Charity Number 1027384 and SCO41839