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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.
BBS UK Members – We Need Your Support!
Our Annual General Meeting (AGM) is coming up, and we’re inviting BBS UK members to join us online.
📅 Saturday 21st November 2026
🕙 10:00am – 11:00am
💻 Via Zoom
This is an important meeting for our charity and we need enough members present for the AGM to go ahead. By attending, you’ll help ensure the continued work and progress of BBS UK 💙
The AGM is also a chance for members to come together, hear updates, celebrate achievements, and have your say by voting for the Board of Trustees.
👉 Register to attend via Zoom here: us02web.zoom.us/meeting/register/Bz83hELxRkGXmaave4qV1A
📝 All AGM documents (agenda, proxy form, minutes, reports, and trustee details) will be available on our website in the comings weeks.
📩 Contact [email protected] if you have any questions
Let’s make sure our voices are heard and our community stays strong. 💙 ...
Welcome! You are invited to join a meeting: BBS UK Annual General Meeting 2026. After registering, you will receive a confirmation email about joining the meeting.
us02web.zoom.us
Welcome! You are invited to join a meeting: BBS UK Annual General Meeting 2026. After registering, you will receive a confirmation email about joining the meeting.0 CommentsComment on Facebook
Have your say on accessible healthcare
Are you blind or partially sighted and living in England? RNIB wants to hear about your experiences of accessing healthcare information and communications.
This could include appointment letters, test results, medication information, messages from healthcare services and digital services such as the NHS App. Whether your experiences have been positive, challenging or mixed, your feedback matters.
The survey takes around 10–15 minutes. Your feedback will support RNIB's work to improve access to healthcare information and communications.
Take part: www.surveymonkey.com/r/DDXKMXF
Please share this post with other blind and partially sighted people living in England.
Closing date: Tuesday 20 October 2026. ...
RNIB Accessible Healthcare Information Survey
www.surveymonkey.com
Take this survey powered by surveymonkey.com. Create your own surveys for free.0 CommentsComment on Facebook
Another week, another inspiring fundraiser taking on an incredible challenge to raise awareness of Bardet-Biedl syndrome (BBS)! 💙🏃♂️
At 69 years old, Bernie Stevens has set himself a fantastic series of running challenges, including the Kent 10K, Great South Run and Paddock Wood Half Marathon, all building up to the Edinburgh Marathon next year, when Bernie will be 70! 👏
Bernie’s granddaughter, 9-year-old Zowie, has BBS. Having seen first-hand some of the challenges Zowie and her family face living with such a rare condition, Bernie wanted to do something to support them while also raising awareness of BBS and supporting the wider BBS community.
We are incredibly grateful to Bernie for taking on such an amazing challenge, and to his Granddaughter Ella-Mae, who ran the Kent 10K with Bernie, for helping shine a light on BBS.
We’ll be cheering you on every step of the way, Bernie! 💙 ...
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Today is BBS Global Day 2026 🎉 Join your global BBS community in a webinar at 4pm where we will be discussing all things BBS - you can register to join here: ...
Welcome! You are invited to join a webinar: BBS Global Day 2026. After registering, you will receive a confirmation email about joining the webinar.
us02web.zoom.us
BBS organizations from around the world share the latest in the community.1 CommentsComment on Facebook
BBS Global Day 2026 is on Saturday 3rd October. BBS UK will be joining the US BBS Foundation, BBS Netherlands, BBS Switzerland, BBS Germany, BBS Denmark and other BBS communities around the world. We'll be hearing updates from the global community including from the BBS Foundation and BBS UK conferences, from extraordinary people with BBS pushing limits and boundaries, reviewing the latest basic and clinical research and more. Join us and your global BBS community on BBS Global Day!
Register here: us02web.zoom.us/webinar/register/WN_g5IvQ-SzTo2tXla-FgCHgQ#/registration ...
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There's a lot that goes into our annual conference, including the setup for the livestream and recordings.
We want to give a huge thank you to nn1audio who have provided reliable and high quality audio visual for our conferences for many years. ...
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Our livestream starts at 9am and you can join without registering by following the link below!
...
Join our Cloud HD Video Meeting
us02web.zoom.us
Zoom is the leader in modern enterprise cloud communications.0 CommentsComment on Facebook
The BBS UK Conference 2026 has officially started!
Our community members have started arriving, greeted by our eager Team BBS UK made up of staff, trustees and volunteers.
We can't wait to spend the weekend with you all!
For those of our community who are tuning into the livestream tomorrow, we welcome you to use the chat function, ask questions and we'll do our best to get them answered.
If you haven't yet registered, you can do so now by following the link below:
us02web.zoom.us/webinar/register/WN_0JQgHTAOTN2OdVB40LjBlg#/registration
Let the weekend begin! ...
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
Just five days until the BBS UK Conference! You can join us from the comfort of your own home by registering for the free livestream.
The stream starts at 9am and is due to finish at 1pm. You'll hear from leading experts in the field of BBS such as crowd favourite Professor Phil Beales, Professor Jeremy Tomlinson, Dr Melanie Kershaw and more!
All you need to do is follow the link below and sign up. You will receive a confirmation email from Zoom.
us02web.zoom.us/webinar/register/WN_0JQgHTAOTN2OdVB40LjBlg#/registration
We hope you can join 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.
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