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 2019


Conference 2019 is on 26th-28th 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. 

Read our Families Letter for more information about the conference.

Conference 2019 booking form now available.

Read our Conference Report from 2018.

BBS UK change in legal status to a Charitable Incorporated Organisation (CIO)

In 2016, the trustees proposed an important change to the legal status of Bardet-Biedl Syndrome UK to convert from a Charitable Unincorporated Association to a Charitable Incorporated Organisation (CIO).The new draft constitution and Information for members is now available to download and we encourage members to read and consider these documents prior to the AGM on the 21st April 2018, as we will be asking those attending to approve this draft constitution. We understand that you may have questions about the conversion but would like to reassure you that the aims of the charity have not changed and this conversion is to strengthen the governance of the charity. The Secretary, Abbie Geeson will be happy to answer any questions you may have. Please do not hesitate to contact her by email at: abbie.geeson@bbsuk.org.uk

New draft constitution

Information for members


See events for further information.


Whitemoor Family Activity Weekend


Save the date: our 2019 family activity weekend will be from 5th - 7th July.


Our 2018 activity weekend took us to Whitemoor Lakes Activity Centre - reports and photos coming soon!


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 new BBS UK GDPR privacy policy is now available to view here.



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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