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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.
💙 A huge thank you to everyone at PJ Fire Ltd who came together to raise an amazing £500 for BBS UK.
The team organised a fun filled fundraising event in support of their colleague Nigel, his wife Gemma and his family, following the diagnosis of his four year old twins, Ruby and Jack, with BBS.
It was wonderful to see the team rally around the family, while also helping to raise awareness of BBS. Throughout the afternoon, people were asking questions about BBS and taking home BBS UK booklets to find out more.
The day included a darts knockout competition, penalty shoot out, refreshments and, judging by the photos, some fantastic cake!
Gemma told us how much the support has meant to their family since Ruby and Jack were diagnosed:
“BBS UK has been amazing since the twins were diagnosed. I was so scared, but having the support from everyone has made things so much better for us.”
We are incredibly grateful to everyone at PJ Fire for getting involved, raising awareness and choosing to support BBS UK. Every donation helps us continue to be there for people with BBS and their families across the UK.
Thank you, PJ Fire! 💙 ...
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Check out Emmy's interview on RNIB's Connect Radio where she talks about her recent work placement with a local theatre and how it is being adapted for her needs.
Emmy will also be speaking at our annual conference next month, sharing how small changes can make a big difference to living with BBS.
Listen now on RNIB's website or find it on Apple podcasts, Spotify or wherever you listen to podcasts.
...
17 August 2026: Playlist for Life & Making Work Placements Accessible
www.rnib.org.uk
If you're affected by sight loss, we're here for you0 CommentsComment on Facebook
Register for the BBS UK Annual Conference 2026 Livestream!
Join the BBS community from the comfort of your own home and watch the morning sessions from the BBS UK Annual Conference 2026.
Hear from leading experts and members of the BBS community as they share the latest developments in research, practical advice for living well with BBS, and personal experiences.
Speakers:
- Scientific Progress and the Future of Living Well with BBS with Professor Phil Beales
- Targeting Metabolic Health in BBS with Professor Jeremy Tomlinson and Dr Melanie Kershaw
- Optimising Vision and Adaptive Strategies with Dr Helen Palmer and Dr Rupal Morjaria
- Safe, Confident & Connected in a Digital World with The Two Johns
- Small Steps, Big Difference: hear from people living with BBS, parents and siblings
📅 Saturday 26 September 2026
🕙 09:00am – 1:00pm (UK time)
💙 Free to attend
To register your place follow the link to Zoom:
us02web.zoom.us/webinar/register/WN_0JQgHTAOTN2OdVB40LjBlg
If you have any questions, please email [email protected].
Whether you're living with BBS, supporting a family member, or are a healthcare professional or researcher, we'd love you to join us online as part of the international BBS community. ...
Welcome! You are invited to join a webinar: BBS UK Annual Conference 2026. After registering, you will receive a confirmation email about joining the webinar.
us02web.zoom.us
Welcome! You are invited to join a webinar: BBS UK Annual Conference 2026. After registering, you will receive a confirmation email about joining the webinar.0 CommentsComment on Facebook
Our next online monthly chat for adults with BBS is happening tomorrow on Thursday 27th August at 7pm - 8pm.
Hosted by our wonderful volunteer Maria Dowswell, this relaxed Zoom session is a chance to socialise and get to know other adults living with BBS.
New members are welcome!
If you’d like to join us, email [email protected] for the Zoom details. ...
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🏃♂️ Best of luck to Bilaal Ali, who is taking on the Nottingham 10K this Sunday in support of BBS UK! 💙
As a BBS UK Trustee and volunteer, Bilaal already gives so much of his time to supporting the charity and the BBS community. Now he’s going the extra mile once again, raising vital funds and awareness by taking on another 10K!
Bilaal completed the London 10K last year, and we’re delighted to see him back on the start line representing BBS UK.
Good luck, Bilaal, we’ll all be cheering you on! 👏🎉 ...
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Our next online monthly chat for adults with BBS is happening on Thursday 27th August at 7pm - 8pm.
Hosted by our wonderful volunteer Maria Dowswell, this relaxed Zoom session is a chance to socialise and get to know other adults living with BBS.
New members are welcome!
If you’d like to join us, email [email protected] for the Zoom details. ...
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🏊♂️🚴♂️🏃♂️ Steven is taking on his second Ironman challenge for BBS UK!
This Sunday, 16 August, Steven will be taking on Ironman Leeds, continuing an incredible journey that has already seen him complete Ironman Bolton in June.
Steven is fundraising for BBS UK in support of his 12 year old step-daughter, Esmae, who has Bardet Biedl syndrome (BBS). And after injuries, a long road to recovery and many months of training, he is determined to make it to that finish line.
We’ll let Steven tell you the rest in his own words:
“I’ve been doing triathlon for 10 years but never done a Ironman event before. So I signed up for Leeds last year. Training was going well until I tore my groin and hamstring so I had to defer my entry to this year. That's when I decided to do it for BBS UK.
It's been a long road to recovery! I put nearly 2 stone in weight on! So when I started training again I got Esmae, who is 12 and has BBS to come training with me on her bike then I was running! I completed Ironman Bolton 70.3 in June which was a half Ironman! And now it’s time nearly time for Leeds Ironman 16th august ! Not 100% ready as I’ve had a couple of small injuries but I will get to the finish line even if I have to crawl.”
What determination! 💙
Please join us in wishing Steven the very best of luck for Sunday. We’ll be cheering you on all the way to that finish line! 👏
💙 If you’d like to support Steven and help him raise funds for BBS UK, you can donate via his JustGiving page: ...
Steven's fundraiser for BBS UK
www.justgiving.com
Help Steven Charles raise money to support BBS UK4 CommentsComment on Facebook
📣 Know Your BBS UK Services: How Can We Help?
Did you know BBS UK offers a wide range of support services and resources for people living with Bardet-Biedl syndrome and their families?
Our “How Can We Help?” leaflet explains the support available, including advice services, clinic support, counselling, information resources, conferences, and social groups.
📄 Read the leaflet here:
bbsuk.org.uk/wp-content/uploads/2026/01/BBS-UK-How-Can-We-Help.pdf
We would really like to hear about your experience. Please complete the short survey in the comments section.
Your feedback helps us apply for future funding, improve and develop our services, raise awareness of BBS, and demonstrate the importance of support services for our community.
Thank you 💙 ...
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Want to support BBS UK and make a real difference?
Why not organise your own fundraiser or take on a challenge?
From school non-uniform days, to bake sales, coffee mornings, walking or running challenges, or even a quiz night, there are plenty of ways to get involved.
Find out how you can support us: bbsuk.org.uk/support-us/
Have an idea or want to get started? Get in touch at [email protected] ...
Support Us - BBS UK
bbsuk.org.uk
Be it donating to participate in a Fancy Dress Friday, or taking on a challenge event as a team to fundraise for BBS UK, there are tons of ways that your work0 CommentsComment on Facebook