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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.
📸 Family quiz and raffle on Saturday evening!
After the formal conference closed on Saturday and the children and young people came back from Drayton Manor, attendees had dinner and then gathered for a fun family quiz and raffle. We also put on a few films and brought arts and crafts for the children and young people to enjoy.
We were blown away by the generous donations to the raffle from everyone, including a very exciting 3-night stay at a luxury accessible holiday home. Thank you to everyone who donated and for purchasing raffle tickets.
#bbsuk #bbsconf2025 ... See MoreSee Less
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📸 Adult social event at #bbsconf2025
On the Friday evening of conference, we held two sessions for adults living with BBS, designed to welcome new attendees, break the ice over fun games, and encourage conversation and laughter. We definitely had some laughs at one table where during the "guess the smell" game, we mistakenly guessed the smell was cheese when it was actually coconut!
We also spent some time thinking about what we would like to do in the future, big or small. These ranged from going on holiday, to learning braille, to continue making cups of tea independently.
Thank you to our volunteer Maria Dowswell who hosted these sessions, and really helped to create a fun and easy-going atmosphere for our #VI adults! ... See MoreSee Less
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⏳ Just one day left to enter the London Marathon 2026 ballot!
Thinking of applying? 🏃♂️ Why not run for BBS UK and help support people living with Bardet-Biedl syndrome. We’d love to have you on our team.
Here’s how to get involved:
✔️ Enter the ballot by Friday 2 May (tomorrow)
✔️ Let us know you’ve applied — we’ll be cheering you on!
✔️ If you get a place and pledge to raise £300+, we’ll refund your £80 entry fee
✔️ Not successful? We’ll help you find another amazing marathon to run
Every step you take helps us continue our vital work — thank you 💛
Get your application in before tomorrow’s deadline, and let us know if you’re running for BBS UK!
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Enter the ballot
www.londonmarathonevents.co.uk
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👏A huge thank you to everyone who joined us for the BBS UK Annual Conference 2025 in Northampton last weekend. It was incredible to see our community come together—sharing experiences, supporting one another, and reminding us all just how strong and connected the BBS community truly is. 💙
📸We'll be sharing photos over the next few weeks, so please comment and show your support for those in the photos—it means a lot to everyone involved!
Here's a few of our team to start off with! We couldn't do it without the help of our staff, trustees and volunteers! ... See MoreSee Less
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Your thoughts about conference 2025 matter to us!
Please take a few minutes to complete our evaluation form following the link.
Your feedback helps us improve and ensures future conferences continue to support and inspire. It’s quick, easy, and makes a big difference.
Thank you for being here in-person or online through Zoom and for sharing your thoughts with us, we truly appreciate it!
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🎉 The London Marathon 2026 ballot is now open!
Thinking of applying? 🏃Why not run for BBS UK and make every mile count!
By choosing to run in support of people living with Bardet-Biedl syndrome, you’ll be helping us continue our vital work — and we’d love to have you on our team.
How to get involved:
✔️ Enter the ballot
✔️ Let us know if you’re applying – we’ll cheer you on!
✔️ If you get a place, pledge to raise £300+ for BBS UK and we will refund your £80 entry fee!
✔️ Didn’t get in? We will support you to find another iconic marathon event!
The ballot closes Friday 2 May, so don’t miss your chance:
We’d love to have you on our team! Get in touch and let us know if you’re applying
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Enter the ballot
shorturl.at
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📣 Live update from #bbsconf2025
Sarah Flack gave key diet advice for those living with #bardetbiedlsyndrome, including portion control, and hidden calories! ... See MoreSee Less
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📣 Live update from #bbsconf2025
All the way from North Caroline, Emily Bartell shared with us her experience of living with BBS, how a great support network is important, as well as some inspiring and motivating advice for those living with VI. ... See MoreSee Less
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📣 Live update from #bbsconf2025
All the way from Germany, researchers Dr Emilia Kieckhöfer, Julia Günzler, Jannis von Spreckelsen and Dr Viola Kretschmer delivered an accessible and interactive scientific talk designed for those living with #bardetbiedlsyndrome. ... See MoreSee Less
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