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. Please look at our Support Page for details of how you can help.
Conference 2017 will be held on 21st - 23rd April at the Hilton Hotel, Northampton.
The annual conference is a fantastic weekend full of learning, networking and socialising opportunities. For the children there are activities available, a crèche for the younger guests and a program of speakers arranged on the Saturday for adults/carers. There are social activities to get involved with ensuring many who attend keep coming back every year.
Booking forms and information will be available in late Summer.
Avon Tyrrel Activity Weekend
The dates for this year’s activity weekend are 23-25th Sept 2016.
The second BBS UK Family Activity Weekend is to be held at Avon Tyrrell Outdoor Activity Centre, set in the beautiful New Forest, across the weekend of 23rd- 25th September. We have negotiated a substantial bursary which means we can keep the cost to our families very low at just £80 per person, including all food and three activities. Children aged 4 and under are free of charge.
Subsidised places are limited, so to ensure you don’t miss out on what promises to be another fantastic weekend, complete and return the booking form as soon as possible. We can’t wait to see you there!
You can now donate online through www.justgiving.com
We thank you all for your continued support
BBS UK is a registered charity
Charity no: 1027384
Chairman Mr Steven Burge
Twitter @BBS UK1