Latest News

20/10/20

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 Christine.saxon@bbsuk.org.uk.

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.

28/09/20

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.

02/09/20

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.

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, doctors, health 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 https://bbsuk.org.uk/education/ or contact admin@bbsuk.org.uk quoting Education Booklet to receive a print copy.

27/07/20

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 Christmas Cards - on sale now!

Tom Horn runs the London Marathon

BBS UK Conference Announcement

BBS UK release an Education Booklet for Parents

Shout-out for the Roache Family

BBS UK Big Summer BBQ

BBS UK Summer Newsletter

Covid-19 Information Hub

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