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Charity partner news

Bardet-Biedl Syndrome UK (BBS UK) publish booklet supporting children and young people with Bardet-Biedl Syndrome in learning environments, across the UK

September sees the release of a “Booklet for Schools and Colleges, supporting children and young people with Bardet-Biedl Syndrome in learning environments across the UK.”

This publication has been produced by Bardet-Biedl Syndrome UK (BBS UK) to promote a greater understanding of BBS and the journey through education from reception to 25. It is aimed at the educational professionals working with children and young people who have BBS, to enable them to more effectively support their students to reach their full potential.

Packed with handy tips, informative clear advice and signposting to existing support agencies, this booklet serves as a tool to help all feel more able to address the multiple challenges that Bardet-Biedl Syndrome can present.

Tonia goes on to explain that ”BBS UK is committed to creating resources to help schools & colleges meet the needs of their pupils with this condition, to give them every opportunity and the right support to achieve the future they are entitled to and are capable of achieving.” 

It has been reported that more than a third (37%) of parent carers say their disabled child has missed school or college because the staff or services are not available or trained to support them (Disability & Education UK 2019 (ONS))

​”I actually had an emergency statement review meeting at the school today and was able to use examples from it in my meeting: This is a great document. Even being the parent of a BBS child and knowing about the condition there were things which never occurred to us. We feel that this will be a great source of reference to schools, childcare providers and anyone else who is in any way responsible for the care of a child or young adult with BBS.” Parent of a young person with BBS.

Each booklet has a fold out passport where the student can express their condition, individual requirements, and interests to support their journey through education.  The printed booklets will be distributed to parents of children with BBS during the autumn term, for them to pass on to their child’s teacher and support team.  The booklet is also available to download using the buttons below via website or get in touch via email quoting Education Booklet to receive a print copy.


Who are Bardet-Biedl Syndrome UK (BBS UK)? 

Bardet-Biedl Syndrome UK was established in 1993 and is the only registered charity supporting people with Bardet-Biedl Syndrome, their families, and carers in the UK. Bardet-Biedl Syndrome (BBS) is a rare, recessively inherited genetic disorder which affects approximately 1 in 100,000 babies born. The aims of the charity are ‘to preserve and protect the health and promote the welfare of persons who have BBS and to advance the education of the medical and educational professionals and the general public on the subject of BBS’.

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