News & Events
BBS UK on Facebook
Latest News
We wish Rebecca goodbye and good luck in her new position. She’ll be sorely missed by everyone at BBS UK.
Join Team BBS UK and run the Manchester Marathon in 2027 for just £30!
BBS UK attended a Parliamentary Round Table on genetic obesity syndromes at the House of Commons.
Back in October, BBS UK joined many international BBS organisations and supporters to celebrate #BBSGlobalDay. In the lead up to the day, a video was created featuring people from around the world sharing their stories.
Registration open for the BBS UK Annual General Meeting on Saturday 8th November 2025.
It’s BBS Global Day this Saturday!
Here at BBS UK, we’re excited to come together with the global BBS community to raise awareness, raise funds and support research into #BardetBiedlSyndrome.
![[Instagram] Fundraising photo collage](https://bbsuk.org.uk/wp-content/uploads/bb-plugin/cache/Instagram-Fundraising-photo-collage-landscape-3e519bf5c6d8e61dbbcaa0c1ade748b9-29alvtne1kum.jpg "[Instagram] Fundraising photo collage")
We’re excited to launch BBS UK Challenge Events. This is your chance to take on a personal challenge while supporting families affected by Bardet Biedl syndrome. Whether you’re looking to run a marathon, walk a scenic route, brave a bungee jump, or take on a family-friendly inflatable course, there’s a challenge for every energy level….
Your donations, whatever the size, help us to continue to support people living with Bardet-Biedl syndrome and their families. Here are all the ways you can donate.
From cake sales to sports events, you can pick a fundraiser that fits your style. Follow our easy guide to set up your JustGiving page and start gathering support today.
We’re also delighted to welcome Alis Stevens as the newest member of the BBS UK Advice Service team.
We’re thrilled to welcome Beatrice Adeogun to the BBS UK team as a new Advice Worker, joining our Advice Service alongside Manager Rebecca Perfect.
It’s #VolunteersWeek — and we’re sending a huge THANK YOU to every one of our amazing volunteers!
We’re thrilled to share that BBS UK has been awarded a 3-year grant from BBC Children in Need!
Your thoughts matter to us! Please take a few minutes to complete our conference 2025 evaluation form.
Delegate Information Packs now available for the BBS UK annual conference on Friday 25th to Sunday 27th April 2025.
Meet our speakers, exhibitors and sponsors for the 32nd BBS UK Annual Conference!
Welcome to our new Chair, Emma Hughes! Emma was voted in as Chair at the Annual General Meeting on 9th November 2024.
Registration open for the BBS UK Annual General Meeting on 9th November 2024.
We’re inviting children with BBS in years 7-11 of secondary school to join us for an exciting weekend of activities and socialising in Birmingham this September!
Join us online for our annual conference! Expect updates on the research and management of BBS, invaluable personal perspectives from our members and an update on the work of BBS UK.
We need your help to review our Medical Information Handbook! We’re asking the whole of the BBS UK community including medical professionals to give us feedback.
The Annual General Meeting of Bardet-Biedl Syndrome UK will be held at the Hilton Hotel, Northampton, on Sunday 24th September 2023 at 10.30am to 11am.
Join families from around the world as they take action on BBS Global Day to raise awareness and funds for the BBS community – take a walk, ride a bike, share on social media, fundraise or donate – join the movement; Together we are Stronger.
Individuals with Bardet-Biedl syndrome (BBS) report experiencing emotional difficulties in addition to physical health difficulties. We want to find out more about what factors impact well-being in BBS.
Huge congratulations to Sarah Leadbetter who has this week won the RNIB’s See Differently Award for Campaigner of the Year.
Sarah has BBS, is registered blind, uses a cane and has a guide dog.
🌈Switchboard LGBT+ Support Line is the national LGBTQIA+ helpline. If you need someone to talk to about sexuality, gender, relationships or sexual health, you can contact them by phone, WhatsApp or by email.
Support Line: 10am-10pm daily 🏳️🌈🏳️⚧️
📱: 0800 0119 100
💬: switchboard.lgbt
📧: [email protected]
#pridemonth #PrideSiblings of disabled people are used to coming second (or third, or fourth…) to the needs of another and it can be hard for us to prioritise ourselves. But you deserve to reach out for support. If you need to talk, call Switchboard #LGBTQ+ #PrideMonth
“For anyone, anywhere in the country, at any point in their journey. We can discuss anything related to sexuality and gender identity. Whether it’s sexual health, relationships or just the way you’re feeling. This is your space – to explore, talk and be truly heard.” - Switchboard ... See MoreSee Less
0 CommentsComment on Facebook
⚽ VI Football club
When Mahir Topar set out to create a football session for blind and visually impaired adults, he knew it wouldn't be easy.
Finding an affordable venue, equipment and coaching support seemed like a major challenge. But after connecting with a football coach he met through the The Royal National College for the Blind (RNC) , an opportunity emerged.
Since launching in November 2025, the blind and visually impaired football sessions at the Arsenal Hub in North London have grown from a six-week pilot into a regular weekly activity, with 13-15 people attending each session.
The sessions offer a regular opportunity to play football, keep active and connect with other blind and visually impaired people in a relaxed and supportive setting. A dedicated WhatsApp group helps attendees stay in touch, and volunteers are on hand to provide sighted guidance where needed.
For anyone attending for the first time, Mahir and the coaching team will even arrange to meet people at the nearby station or bus stop and walk with them to the venue.
If you've been thinking about trying a new sport or activity, why not give it a go?
📍 Blind and visually impaired football sessions
🕒 Every week, 3pm-4pm
📍 Arsenal Hub, 56 Benwell Road, London N7 7BA
If you'd like to find out more about the sessions or get in touch with Mahir, please email [email protected] and we'll be happy to help.
Not based in North London? Visit British Blind Sport's Find an Activity directory to discover blind and visually impaired sports and activities in your local area.
The video below is from Mahir's YouTube channel, where he shares videos about the VI football club and his daily life as someone living with BBS. ... See MoreSee Less
0 CommentsComment on Facebook
BBS UK Service User, Trustee and Volunteer Bilaal Ali is taking on another 10K this August! 🏃♂️
After an incredible experience at the London 10K last September, Bilaal was inspired to sign up for another challenge to help raise awareness of Bardet-Biedl syndrome.
This time, he'll be taking on the Nottingham 10K, continuing his efforts to support the BBS community and shine a light on the condition.
If you'd like to show your support, please leave a message of encouragement in the comments. You can also donate to Bilaal's fundraiser via the JustGiving link in the comments below.
A huge thank you to Bilaal, whose determination, positivity and commitment continue to inspire everyone at BBS UK.
Video description: Bilaal walks through woodland using a white cane.
Inspired by Bilaal's dedication? There's still time to sign up for the Nottingham 10K and run alongside him while raising awareness and funds for BBS UK.
If you'd like to take part in the Nottingham 10K or another fundraising challenge, email [email protected] to learn more and get involved. ... See MoreSee Less
2 CommentsComment on Facebook
Our updated Intro to BBS booklet is now available in PDF!
If you're new to all things BBS, or would like a refresher, you can access the booklet through the link below:
bbsuk.org.uk/wp-content/uploads/2023/07/Introduction-to-BBS-Booklet-PdF-Format.pdf ... See MoreSee Less
0 CommentsComment on Facebook
Could one small change make a big difference to your confidence and independence?
RNIB's Confident Living: Travel guide is packed with practical advice for people with sight loss, covering topics such as mobility training, public transport, taxis, travel assistance, and travelling further afield. Whether you're looking to build your confidence, learn something new, or simply feel more prepared when travelling, there's something here for everyone.
📖 Read the guide here:
media.rnib.org.uk/documents/Confident_Living_Travel_2021.pdf
Have you taken a small step recently that has helped you feel more confident when travelling? We'd love to hear your tips and experiences in the comments. ... See MoreSee Less
media.rnib.org.uk
media.rnib.org.uk
0 CommentsComment on Facebook
🏃♂️ We have 5 places available at the Brighton Marathon 2027!
With its incredible seaside atmosphere, crowd support and iconic route, the Brighton Marathon is an unforgettable challenge whether you are a first time marathon runner or chasing a new goal.
🎟 Charity places are just £20
💙 Minimum fundraising target: £300
Every mile you run helps support individuals and families affected by Bardet Biedl Syndrome.
👉 Register now through Run for Charity and join Team BBS UK
Know someone who would love this challenge? Share this post with them!
Questions? [email protected] ... See MoreSee Less
runforcharity.com
runforcharity.com
BBS is a multi-system disorder that has a significant impact on the quality of life and may be life-limiting. Key features are visual impairment, kidney abnormalities, obesity and more.1 CommentsComment on Facebook
🔎Have you been intrigued by Meta Glasses but aren't quite sure what they can do? Graham from Somerset Sight explains it all in this handy video.
At our conference in September, Guide Dogs UK will be demonstrating Meta Glasses and will be on hand to answer any questions you might have.
If you'd like to attend our conference, you can either visit our website or email [email protected] ... See MoreSee Less
2 CommentsComment on Facebook
Last week, our very own Shirin visited the iconic carved rock city of Petra in Jordan, and she made sure to take BBS UK with her!
Shirin proudly represented the charity and the BBS community with her BBS UK tote bag, and now she’s inviting you to do the same.
We’d love to see where our BBS community gets to, whether you’re wearing a BBS UK t-shirt at the beach, carrying your tote bag on holiday, showing your badge at the local park, or taking your hoodie on a day out.
We may be part of a rare community, but we’re spread far and wide.
Share your photos with us and help us show all the different places the BBS community can be found! ... See MoreSee Less
0 CommentsComment on Facebook
Looking for a new challenge or adventure? 🛥️
VISA-GB helps blind and partially sighted adults experience the freedom of sailing through training, day trips, social activities and sailing holidays. Whether you're completely new to sailing or looking to build on existing experience, there's a range of opportunities to get involved.
One of our service users, Abi, shared her experiences with VISA-GB in our newsletter, describing how sailing has helped her build confidence, develop new skills and enjoy some incredible experiences.
Find out more about VISA-GB and what they offer: visa-gb.org.uk
If you'd like to read Abi's story, click the link in the comments and head to page 21. ... See MoreSee Less
Visually Impaired Sailing Association Of Great Britain | VISA
visa-gb.org.uk
The Visually Impaired Sailing Association empowers, motivates & encourages visually impaired people to join a team & have the chance to get stuck in and involved in something fun. Joining is easy, sim...1 CommentsComment on Facebook