BBS UK Christmas Cards - on sale now!


The BBS UK Christmas cards are available now! They're A6 size with envelopes and cost £3.75 for 5 or £ 7.50 for 10 (this includes postage and packing). If you are interested in purchasing some for Christmas please send your order requirements and postal address to

Payment options:

Cheque – All cheques must be made out to BBS UK and sent to 161 Finedon Road, Irthlingborough , Northants. NN9 5TY.

Online – Online banking payments accepted. Account name:  Bardet Biedl Syndrome U.K, Account number 20368253, Sort Code 20-19-97. Please write “Cards” in the reference.

Tom Horn runs the London Marathon


Congratulations and huge thank you to Tom Horn, who took part in the Virtual London Marathon on 4th October 2020 raising funds for BBS UK, he completed in fantastic time despite the appalling weather conditions! Well done Tom!
If you or anyone you know is interested in running for BBS UK next year you can enter the Virgin Money London Marathon Ballot for your chance to be on the start line on  3rd October 2021. More information about how you can enter here: Virgin Money Marathon Ballot

BBS UK Conference Announcement


With the Coronavirus pandemic continuing to have a significant impact globally and looking to continue throughout the winter and into the Spring, BBS UK has had to take the very difficult decision to make Conference 2021 a virtual event. Restrictions are beginning to increase again around the country and look set to fluctuate throughout the next 6 months and it is no longer possible for us to deliver the event we had planned. We understand how disappointing this will be for our membership and truly understand the need to come together as soon as we possibly can however the well-being of our membership and team is our primary concern.
We are truly excited at the opportunities offered by a BBS UK virtual conference which will be held on Saturday 15th May; in particular, we look forward to being able to welcome our wider membership from around the UK and overseas. The event will be free of charge and will feature a selection of keynote talks about research and development in the world of BBS as well as the much anticipated and valued personal perspectives. We also hope to provide members with the opportunity to take part in workshops and Q&A sessions. We are still in the planning stages of this and will be able to provide more information over the coming months. Rest assured that as soon as we are able to do so we will organise a membership wide event to enable us all to come together socially once more.

BBS UK release an Education Booklet for Parents


September sees the release of a Booklet for Schools and Collegessupporting 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. 

Clinical lead for BBS UK, Tonia Hymers says, It is estimated that Bardet-Biedl Syndrome (BBS) affects approximately 600 people in the UK.  Many GPs, doctorshealth professionals and educators will not have come across BBS before and there are many who have not heard of the syndrome. 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.  

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 via the following link or contact quoting Education Booklet to receive a print copy. 

Shout-out for the Roache Family


Neil Roache (brother of Graeme) successfully completed the Three Peaks Challenge in 23hrs 5 mins and has raised £1508 plus £195 Gift Aid for BBSUK. He began the challenge at 4pm on 8th July at Snowden finishing at 3.05pm on 9th July at Ben Nevis. Robert, his dad was his driver and safety man on the ground. Snowden (weather was dismal), Scafell Pike was done in darkness!

Weather in Scotland for Ben Nevis was dry and sunny. Graeme, his mum Margaret and Mirin the dog, met the guys in Fort William before Neil did his last climb on Ben Nevis. This was a huge personal challenge for Neil and we are absolutely thrilled he raised much-needed funds for BBS UK at the same time. WELL DONE AND THANK YOU! (Photo shows Graeme, Neil and Mirin at Ben Nevis)

BBS UK Big Summer BBQ


BBS UK Big Summer BBQ kicked off on Saturday 25th July - an opportunity for us all to celebrate together (albeit virtually), have fun, enjoy some delicious food while at the same time raising crucial funds for the charity! Don’t worry if you’ve been rained off or haven’t didn’t have chance to do yours yet – it’s open all summer for anyone that’s interested to join. More info here:


BBS UK Summer Newsletter


We're excited to announce the BBS UK Summer Newsletter is now published! To view click here: 

This edition includes our latest news, updates, fundraising announcements, personal stories from our members, research opportunities as well as lots of useful info & resources.

HAPPY READING and please keep in touch via, we welcome feedback, ideas and suggestions for future articles!

Covid-19 Information Hub


The BBS UK COVID-19 Information Hub has been updated to reflect changes to social distancing guidance and the new government advice for those shielding (which comes into force on Saturday 4th July). We hope you find the information helpful, click here for access: