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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.
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
Retina UK's conference is this weekend!
They have a fantastic programme scheduled, including updates on clinical trials, assistive technology for people with inherited sight loss, a research panel and more.
You can sign up for the livestream for free by following the link below to their website, and completing the request form at the bottom:
...
Retina UK Annual Conference 2026
retinauk.org.uk
We will be back in London (and online) in 2025 for our Annual Conference. More details will be available soon.2 CommentsComment on Facebook
🎤 Just 10 days to go until our Annual Conference in Northampton! 🎉
We hope you’re as excited as we are!
On Saturday evening, we’ll be turning up the music for a group karaoke session 🎶 Grab your family, friends or some new conference buddies and come up together to sing along to a favourite song!
Now we need your help choosing the music… 👇
🎵 What songs would you love to sing along to?
ABBA? Queen? Taylor Swift? A bit of Disney? Or something guaranteed to get the whole room joining in?
Drop your favourite karaoke songs in the comments below, or email [email protected].
We can’t wait to hear your suggestions and have a good old singalong together! 🎤 ...
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We'd like to give a warm welcome to our newest member of Team BBS UK: Jo Walton! 👏
Jo is our new Support Services Manager and will be leading our Clinics Support and Advice Services, helping to ensure that children, adults and families living with Bardet-Biedl syndrome receive high-quality, responsive and person-centred support.
With a degree in Special Needs and Inclusion into Society, Jo has built her career around supporting people with disabilities and additional needs, promoting inclusion and advocating for greater equality and opportunities.
Her experience spans disability advocacy, campaigning, service and team management, and developing support that enables people to have greater choice, independence and control over their lives.
Jo says she is “looking forward to using her experience to help develop and strengthen BBS UK’s support services and to working collaboratively with the BBS community, colleagues and professionals.”
For those attending our in-person conference, you will be able to meet her there and welcome her into the BBS community.
Welcome to the team Jo! 💙 ...
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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/2017889727680/WN_g5IvQ-SzTo2tXla-FgCHgQ
You can see a recording of last year's Global Day here: www.youtube.com/watch?v=dpwB6PRU5yg ...
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🎉 A huge congratulations to our trustee and fundraiser, Bilaal Ali, who completed the Birmingham Running Festival 10K on Sunday in 2 hours and 18 minutes!
Bilaal, who lives with Bardet-Biedl syndrome himself, took on the challenge to raise funds and awareness for BBS UK and has raised an incredible £555 so far. 💙
This isn’t Bilaal’s first 10K either! After completing the London 10K last September, he’s quickly building an impressive collection of race medals and continuing to challenge himself along the way.
Throughout his training, Bilaal has been learning to run using a tether and building his confidence alongside his guide, Mohammed Osman. He also trained with the Sheffield Royal Society for the Blind, who helped him develop his skills and confidence ahead of the big day.
And while there were a few hills, his reason for taking on the challenge kept him going:
“I know exactly why I’m doing it and how much BBS means to me. Having lived with BBS myself, it’s a cause that is very close to my heart, and that gives me the motivation to keep pushing forward, even when things get difficult.”
Crossing the finish line was an emotional moment for Bilaal:
“I proved to myself that being blind and living with BBS doesn’t have to stop me from pushing myself, trying new things and achieving things I’m proud of.”
We’re incredibly grateful that he continues to challenge himself, raise awareness and fundraise for the charity and wider BBS community.
Congratulations, Bilaal! We have a feeling that medal collection might keep growing… 🏅
A huge thank you as well to Mohammed, everyone who supported Bilaal throughout his training, and everyone who has donated so far.
#BBSUK #BardetBiedlSyndrome #BirminghamRunningFestival #10K #Fundraising #TeamBBSUK ...
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Sight Village North Wales is on Tuesday 22nd September at The Arena at Venue Cymru in Llandudno.
It's a free event where you can discover, explore, and experience the latest technology, products, and services designed to make everyday life easier for people living with vision loss.
To register your place, visit the link below!Less than 3 weeks to go until Sight Village North Wales!
We are excited to announce a few more of our special guests who will be attending the event and hosting talks about their experiences.
Paul Jenkinson is a blind photographer from Y Ffôr who creates powerful landscape and wildlife images across Gwynedd.
Karina Jones is a visually impaired Welsh actress and aerialist who has performed with the Royal Shakespeare Company and theatres across the UK.
Phill Jones from Caernarfon is a young partially sighted musician who has released his debut single, 'Diolch I Chdi', which reflects his personal journey of overcoming sight loss.
If you would like to hear their stories, ask questions and even enjoy some live music, you can book your tickets now at the following link:
www.qac.ac.uk/exhibitions/sight-village-north-wales--brand-new-location-2026/1954.htm ...
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The Partially Sighted Society posted this question "Which unexpected skills have you developed because of your sight loss?"
And we just loved reading the answers from their community! So we would love to know from the BBS community what skills they've developed
Let us know in the comments!Which unexpected skill have you developed because of your sight loss?
Living with sight loss often means learning to approach familiar things differently. Along the way, many people develop skills they never expected to have.
Perhaps you can recognise someone by their footsteps, remember routes and room layouts in remarkable detail, notice tiny changes in sound, master accessibility technology or find creative solutions to everyday problems.
These adaptations can become so automatic that they no longer feel like skills, but they absolutely are.
What is yours? Let us know!
[Image description: A high-contrast graphic featuring a bright yellow background with bold black text, optimized for readability. The Partially Sighted Society logo sits in the top right corner. Centered between two horizontal black lines, the main text reads, 'Which unexpected skill have you developed because of your sight loss?' Below, the call to action states, 'Tell us in the comments.' ]
#sightlosssupport #SightLoss #PartiallySighted #VisuallyImpaired #Accessibility #LivedExperience #SightLossSupport ...
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💙 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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