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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.
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
- Safe, Confident & Connected in a Digital World with The Two Johns
- Small Steps = Big Difference, a lived experience panel
📅 Saturday 26 September 2026
🕙 10:00am – 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. ... See MoreSee Less
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
We know that many of our community benefit from the Access Card which enables you to get the access requirements you need at thousands of venues and attractions.
If you've not heard of it before, follow the original post for more information or visit www.accesscard.online/ ... See MoreSee Less
Access Card: Making access easy
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Get your access requirements recognised at thousands of events, attractions, venues, and locations across the UK and beyond.0 CommentsComment on Facebook
6 weeks to go until Bilaal takes on the Nottingham 10k for BBS UK!
Trustee and service user Bilaal Ali lives with BBS and strives to challenge himself while supporting and representing the charity and the wider BBS community.
The video shows Bilaal training by walking in woodlands using a white cane. He is wearing a white BBS UK t-shirt.
Thank you Bilaal for your hard work! ... See MoreSee Less
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BBS UK service user Ross Gallagher can't be stopped! 🎉 He's completed yet another parkrun, bringing his total to an incredible 11!
Read more about Ross's running journey and everything he's achieved in the article below.
We're incredibly proud of Ross, who continues to show that hard work and determination really do pay off.
Being physically active can have real benefits for our physical, mental and emotional wellbeing. Whether it's running, walking, swimming, dancing or simply moving in a way that works for you, every step counts. We hope Ross's journey inspires others in the BBS community to find an activity they enjoy and celebrate their own achievements, however big or small. 💙👏Visually impaired runner Ross Gallagher has now completed all eleven 5k parkruns in Co Cork!... corkrunning.blogspot.com/2026/07/visually-impaired-runner-ross-gallagher.html ... See MoreSee Less
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Last week marked an emotional but inspiring milestone for BBS UK service user Hamza and the specialist BBS clinics team in Birmingham.
Having recently turned 18, Hamza attended his final appointment at the BBS Clinic at Birmingham Children's Hospital before making the transition to the Adult BBS Clinic at Queen Elizabeth Hospital.
Moving from children's to adult services can feel like a big step. Over the years, Hamza has built strong relationships with the clinical team, who have watched him grow from a young boy into a resilient and determined young man. While he may be saying goodbye to the children's team, the BBS UK team will continue to be there alongside him, working with the adult clinic and supporting him throughout the next stage of his journey.
One of the greatest strengths of the NHS specialist BBS clinics is that they provide expert care throughout every stage of life, supporting children as they grow into adulthood. Alongside this, BBS UK is there every step of the way, offering information, practical support and a community that continues beyond the clinic.
We would like to thank the Birmingham Children's Hospital team for the care and support they have provided to Hamza over the years, and wish him every success as he begins this next chapter with the adult team.
We're proud to be alongside our community throughout their BBS journey, from childhood to adulthood and beyond.
If you or a family member are living with Bardet-Biedl syndrome in the UK or Ireland and would like to access one of the NHS specialist BBS clinics, please contact [email protected]. Our team can provide information about the referral process and help you access the support available. ... See MoreSee Less
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BBS UK volunteer and service user Aneeba attended Sight Village Birmingham earlier in the week, alongside BBS UK Patient Liaison Officers Amy and Laura.
They had a great morning visiting the exhibition tables, speaking to professionals in the sight loss sector, and learning about accessible technology and support services.
If you'd like to attend a Sight Village, visit www.qac.ac.uk/exhibitions and find an event near you. ... See MoreSee Less
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Our next online monthly chat for adults with BBS is happening on Thursday 16th July at 7pm - 8pm.
Hosted by our wonderful Trustee Rachael Zimbler, 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. ... See MoreSee Less
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We'd like to share a very special fundraising update.
Mollie, a young girl living with Bardet-Biedl syndrome (BBS) in Ireland, recently organised a spelling competition with the fantastic support of her school. An incredible 60 children took part, making it a wonderful community effort.
Together, they raised an amazing £769.50 for our charity. Just as importantly, they helped raise awareness of BBS and started conversations about this rare condition.
We can't thank Mollie and her dad, Shaun, enough for their enthusiasm, dedication, and commitment to helping more people learn about BBS. They are both pictured below, and we're so proud of everything they've achieved.
Thank you, Mollie and Shaun, for making such a meaningful difference! ... See MoreSee Less
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Talking radios are a great way for people living with sight loss to enjoy music, radio, podcasts and other audio media. If you would like to apply for a free talking radio, you will need to meet the following criteria:
- live in the UK
- live with sight loss.
- be in receipt of one of the following benefits:
Disability Living Allowance (DLA)
Personal Independent (PIP) or Attendance Allowance (AA)
Adult Disability Payment (ADP)
any means-tested benefit
a parent or guardian receiving one of these benefits (if the person receiving the device is under 18).
To apply or find out more, follow the link to the website or call 01622 754757Say hello to talking radios 📻
The most frequent request we get from the people we support is a talking radio.
Drum roll please!
We are delighted to share that we now offer this!
The Talking Easy Music Player, designed for people living with sight loss, has been added to our range of accessible audio devices for people living with sight loss.
"The Talking Easy Music Player combines the simplicity of a traditional radio with the audiobook capability of a USB player, while also being accessible without needing broadband or a smartphone," Steven, our Service Delivery Manager, explains.
"The player features clear voice guidance, simple one-button operation and no complicated menus."
It plays audiobooks from USB, and it can also be used as a Bluetooth speaker.
The Talking Easy Music Player is available free of charge to people with sight loss in the UK who meet our eligibility criteria. Our team can also provide telephone support to help with setup.
Find out more and how to request a device: blind.org.uk/get-support/audio-devices/
Image description: A bright yellow Talking Easy Music Player with two large front speakers and an extended radio aerial is shown against a light blue background. Above the device, a large white speech bubble with a dark border reads: "Hello to talking radios". The simple, bold design highlights the accessible radio and music player for people living with sight loss, now offered by the charity BWBF. ... See MoreSee Less
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