Our BBS community’s joint experiences have enabled us to become experts in our own condition which has a major impact on future health and well being and strengthens our knowledge and the support we can give to each other. We have generational role models who share their experiences to inspire and empower other generations and we understand each other and the struggles we face and are a family that is inclusive, accepts, appreciates and values.

We can help

  • By putting you in touch with other families who are facing similar problems
  • By passing on advice which has helped us in the day-to-day management of the condition
  • By sending information which will help professionals in medical and educational fields to understand more about BBS
  • By advising about benefits to which you may be entitled (U.K. and Eire)
  • By involving you in projects that enable you to connect with others in the same situation
  • Most of all, by listening and caring

There are no charges made for the information or support we provide. By becoming a member of BBS UK you will receive our newsletters which cover a wide range of issues for people with Bardet-Biedl Syndrome and the families, carers and professionals involved in their care as well as our Family Conference Weekend report which contains edited excerpts of the talks and presentations as well as sharing knowledge and details of our activity projects.

This website provides a wealth of information and resources for you to access anytime. You can catch up with latest issues and backdated copies of our newsletters and conference reports, please follow the main tabs to the pages to download and view. Below are our Medical Information Booklet and Who We Are & How Can We Help leaflets.

Bardet-Biedl Syndrome UK Medical Information Booklet

This booklet has been produced by Bardet-Biedl Syndrome UK to promote a greater understanding of Bardet-Biedl Syndrome and the recommended care pathway. It is aimed at the medical and healthcare professionals involved in the care of Bardet-Biedl Syndrome patients and also those living with the syndrome, their parents and carers, with the aim of encouraging better self-advocacy and health care management. The information contained within this booklet has been provided and checked by the BBS Specialist Clinics team and where possible is supported by research and published articles. A bibliography of references and useful publications can be found at the back of the booklet. For further information, or to order a copy, contact: Click below to view / download the Bardet-Biedl Syndrome UK Medical Booklet.

Who are we & how can we help?

This small tri-fold leaflet includes basic information about Bardet-Biedl Syndrome and BBS UK. A standing order form is attached for those who wish to become a ‘Friend’ of the Charity. Click to view / download the leaflet in word or pdf.