BBS UK Publications

Information and Guidance Documents

Find below all of the BBS information and guidance documents that have been published to date.

BBS UK has been awarded the PIF TICK – the UK’s only quality mark for print and online health information. To become a ‘trusted information creator’, BBS UK had to undergo an assessment showing it met 10 key criteria.

This means you can be assured that what you are reading, watching or listening to is evidence-based, understandable, jargon-free, up-to-date and produced to the best possible standard.

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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. The last review was conducted in December 2020.


This booklet is designed to aid understanding of BBS within schools and colleges. Based on the views of children and young people who have BBS and their parents and carers, this publication was written in collaboration with medical and education professionals, experienced and interested in BBS.

We aim to improve awareness and understanding of BBS amongst educators to enable them to more effectively support their students to reach their full potential.


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.


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 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.


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.

The information is designed to help parents and carers effectively advocate for their child/young person and ensure they are given the best support possible.


‘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.


BBS Newsletters

Click below to open the individual newsletters as readable PDF documents.

If you have news or information that you would like included in a future newsletter, please contact [email protected]

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AGM & Annual Reports

The Annual General Meeting provides the Charity with the opportunity to update members on its activities, achievements, and progress during the previous year.

It also gives members the opportunity to vote on who they want to represent them on the Board of Trustees by electing the Honorary Officers and Trustees and to vote on important resolutions which may be put forward during the meeting.

Conference Reports

Up to and including 2021, a comprehensive overview of the BBS UK Conference was provided via a magazine style report, copies of which can be accessed below.

BBS UK Conferences are now recorded and available to view via this website. A summary is also included in a newsletter each year.

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