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 newslettersconference 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 2018


Conference 2018 is on 20th-22nd April and will be held 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. Please read the family conference letter  for further information.

Further information and booking forms can be found in the conference section of our website.


Whitemoor Family Activity Weekend


Join us at Whitemoor Lakes Activity Centre in beautiful Staffordshire for our 3rd family activity weekend from 1st - 3rd June 2018.

Take a look at our events page for further information & complete a booking form, before 19th March to secure your place.


Can you help?

Are you interested in volunteering for BBS uk?

If yes, please fill in our volunteer form and return to us via email or post.



The Gang


BBS UK are working on a grant project called Breaking Down Barriers, for further info please click here.

"We are very excited to report that BBS UK have been successful in their bid for a grant from Genetic Disorders UK as part of their Jeans for Genes campaign 2016. The grant is to enable us to develop further information resources for our young members. More information will be available over the coming months. Our thanks to everyone at Genetic Disorders UK, we look forward to working with them over the coming year. http://www.jeansforgenesday.org/.”

Just Giving

 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
Office of Scottish Charity Regulator SC041839

Chairman  Richard Zimbler (acting chair)
President  Professor Philip Beales BSc LMSSA MD FRCP
Patrons     Baroness Helena Kennedy of the Shaws Q.C

FSCB - give with confidence

Twitter @BBS UK1

BBS UK YouTube channel


Main Sections in our website...



BBS medical booklet, view here.


Winter newsletter, view here.

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