Find below all of the BBS information and guidance documents that have been published to date. If you would like any of these files in an alternative format please contact us via 


Introducing Bardet-Biedl Syndrome

The Introducing Bardet-Biedl Syndrome booklet provides a summary of BBS and its key symptoms and treatments. It also addresses some of the most commonly asked questions from those diagnosed with BBS, their parents/ carers and extended support network. The booklet can be downloaded via the following links:

Introduction to BBS Booklet (PdF Format)

Introducing BBS Booklet (Word Format)


Bardet-Biedl Syndrome Medical Information Handbook

It is estimated that Bardet-Biedl Syndrome (BBS) affects approximately 500 people in the UK. Many GPs, doctors and health professionals will not have come across BBS before and there are many who have not heard of the syndrome. This booklet has been produced by BBS UK to promote a greater understanding of the syndrome and the recommended care pathway. It is aimed at the medical and healthcare professionals involved in the care of BBS 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. Click on the link that follows to download a copy of the document: BBS UK Medical Handbook

*Please note the Medical Information Handbook is in the process of being reviewed and an up-to-date copy will be available on this page in the coming weeks. In the meantime, you can continue to use the current handbook as there are no significant changes being made and the information is still relevant and useful.*


Who we are and how we can help!

'Who we are' is a leaflet that you can read online or print and share amongst family, carers and health professionals. It provides an overview of the charity and how we can help all those affected by BBS.

Click the links below for access to both Word and PdF versions of the leaflet.



BBS UK Booklet for Schools and Colleges

BBS UK is pleased to announce the publication of a new booklet to aid understanding of BBS within schools and colleges.  The booklet is based on the views of children and young people who have BBS and their parents and carers and has been written in collaboration with medical and education professionals, experienced and interested in the condition. We hope the booklet improves awareness and understanding of BBS amongst educators to enable them to more effectively support their students to reach their full potential. Click on the link that follows to download the booklet in PDF format: BBS UK Booklet for Schools + Colleges

SEND and EHCP Factsheet

BBS UK have developed an information sheet for parents and carers of children and young people who have BBS to aid understanding of Special Educational Needs (SEN) provision in schools, to help parents and carers effectively advocate for their child/young person and ensure they are given the best support possible. Click on the link that follows to download a copy:SEND + EHCP Factsheet

My Life, My Future – A booklet about Transition

My Life, My Future is a young person’s guide to living their life with Bardet-Biedl Syndrome. The booklet has been put together by BBS UK to help young people who have BBS achieve the best life possible. You may have heard the word ‘Transition’ being used by health professionals. It is often used as a way to describe growing up and managing changes at key points in our lives. This includes all sorts of things like changing schools, starting work, making new friends or managing emotions. It also includes planning and preparing for your eventual transfer to adult healthcare services. As you get older you will want to have more choice, make your own decisions and develop the confidence to speak up for yourself. My Life, My Future is a useful toolkit of information to help you on your way to being more independent and get you thinking about how you would like to live your life. Click the link that follows to download the document in PdF format: Transition handbook