Find below some of the key BBS information and guidance documents that have been produced and published by BBS UK. If you would like any of these files in an alternative format please contact us via 


Bardet-Biedl Syndrome features in SEN Magazine - January 2021

Take a look at the January 2021 edition of SEN Magazine which features Bardet-Biedl Syndrome and raises invaluable awareness of this rare condition and the impact it has on children and young people in education.


BBS UK Webinar for Parents and Carers - Watch here


The full recording and presentation slides from the BBS UK Education webinar held on 8th October 2020 are available to view by clicking the links below. Watch to gain an insight into the recently published BBS UK Booklet for Schools and Colleges and for advice and guidance on SEND provision in education and how to best advocate for your child/young person.

BBS UK Webinar Slides - DOWNLOAD

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

Student Passport

What is a Student Passport?

A student passport is an important document for the child/young person with BBS to describe how BBS affects them. It is aimed at all staff working with students with BBS to support their learning, teaching and access to the curriculum and learning environment. By focusing on specific provisions and considerations that need to be made, the Student Passport gives students confidence that people are aware of their needs and appropriate strategies are being shared.

Below is a link to a blank Student Passport that can be downloaded for completion, we have also provided a completed Student Passport as an example of how to populate.

Student Passport (Blank for completion)

Example of completed Student Passport

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