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 2017


Conference 2017 is being held this weekend 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.


Delegates info pack conference 2017


Booking and information forms for conference now available:

Conference letter for families

Conference letter for professionals

Booking form



Exciting Opportunity at BBS UK...


We are looking to recruit a support officer  to BBS UK in the Birmingham area.

Are you interested? Please click on the link for more details and application form.



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.


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!




The Gang


"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.


Spring newsletter, view here.

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