News & Events
BBS UK on Facebook
Latest News
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.
We have an exciting opportunity for a Clubs and Participation Assistant Intern to join our team through Thomas Pocklington Trust’s Get Set Progress Internship Programme.
As part of our Sport Development team, the Clubs and Participation Assistant Intern will:
• Build positive relationships with clubs, volunteers, and participants
• Act as a regular point of contact for clubs, providing ongoing guidance and support
• Connect clubs with training, funding opportunities, and resources
• Support blind and partially sighted participants by signposting them to local sport and physical activities
• Monitor progress, identifying challenges and helping clubs achieve their development goals
• Maintain records and share insights to help improve programmes and participant experiences
• Support the growth of our online Activity Finder
Deadline for applications is Friday 17th July at 5pm.
Please note that this role has a Genuine Occupational Requirement that the successful applicant be a person who is blind or partially sighted, in line with The Equality Act 2010.
For more information, and to apply, go to: 👉 britishblindsport.org.uk/jobs/11169
[Image description: BBS asset for the role of Clubs and Participation Assistant Intern. The image features a large megaphone on the left side, angled slightly upward. Above the megaphone, there is a red and white rectangular banner with the text "We're Hiring." Below this, the text "Clubs and Participation Assistant Intern" is prominently displayed. Further down, there is an invitation to apply online with the URL "www.britishblindsport.org.uk/jobs." At the bottom, is the Get Set Progress internship programme logo.] ... See MoreSee Less
1 CommentsComment on Facebook
We're pleased to share that BBS UK has once again met the standards of the NHS Data Security and Protection Toolkit.
Protecting the personal information of the people we support is something we take incredibly seriously. Completing the Toolkit demonstrates that we have robust processes in place to keep information secure and ensure it is handled safely, responsibly and in line with NHS data security standards.
Everyone who shares their information with us can feel confident that it is being treated with the care and respect it deserves.
You can view our published Data Security and Protection Toolkit status here: ... See MoreSee Less
Organisation Details
www.dsptoolkit.nhs.uk
We'd also like to use analytics cookies. These send anonymous information about how our site is used to a service called Google Analytics. We use this information to improve our site.0 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 💙 ... See MoreSee Less
1 CommentsComment on Facebook
The BBS team at Birmingham Children’s Hospital has some new faces to introduce and one familiar face to say goodbye to.
After many years of dedication, hard work and commitment to the BBS service, Dr Melanie Kershaw will be retiring to pursue new projects and opportunities. Melanie has made an enormous contribution to the care of children and families with Bardet–Biedl syndrome, and while she will be greatly missed by both colleagues and patients, we wish her every success and happiness in this exciting new chapter. Dr Kershaw will be speaking at the upcoming BBS UK conference in September so it won't be goodbye for very long!
We are also delighted to welcome two new consultants who will be joining the BBS service and helping to continue the excellent care provided by the team: Dr Sarah Ehtisham and Dr Elizabeth Baranowski.
Pictured from left to right are: Dr Melanie Kershaw, Laura Davis, Dr Sarah Ehtisham, Dr Elizabeth Baranowski and Amy Clapp.
We look forward to continuing to support our BBS families and to working together in this next phase of the service. ... See MoreSee Less
2 CommentsComment on Facebook
Dear Members,
We are excited to invite you to our next South Asian Support Group session taking place on:
📅 Tuesday 30th June 2026 at 7pm
💬 Topic: Mental Health & Wellbeing
This month, we will be opening up an important conversation around mental health within the South Asian community — exploring how we look after ourselves, support each other, and recognise when we may need extra help.
Living with Bardet-Biedl Syndrome (BBS), caring responsibilities, cultural expectations, family pressures, or everyday challenges can sometimes feel overwhelming.
This session will provide a safe and welcoming space to:
🌱 Talk about emotional wellbeing
🌱 Share experiences and coping strategies
🌱 Discuss barriers around mental health conversations in our communities
🌱 Learn ways to prioritise self-care
🌱 Connect with others who understand
As always, this group is a friendly and supportive environment. Whether you want to share your experiences or simply come along and listen, you are very welcome.
We hope you can join us for what promises to be an empowering and meaningful discussion.
If you'd like to join, please email [email protected] or [email protected] ... See MoreSee Less
0 CommentsComment on Facebook
The weather has been absolutely beautiful!
But sometimes it's easy to forget to stay safe in the warm weather. Mencap have put together some easy tips for staying cool and safe in the hot weather such as:
-staying in the shade
-wearing SPF30+ sun cream and applying it regularly
- drinking water regularly
- wearing sunglasses, a hat, and loose light clothing
You can read all of the tips by following the link below to their original postThis week, the weather is expected to be very hot.
People with a learning disability, autism, and ADHD might not notice when they are getting too hot or need a break.
They might not know they are overheating until they feel unwell.
We have made an easy read to help you stay safe and comfortable in the heat. It has ways to stay cool, how to protect yourself from the sun and other helpful tips for hot weather.
Please take a look and share with others who might find it useful. Please also check in on people who may need extra support during the hot weather.
Check out our easy read here: brnw.ch/21x3yle
#LearningDisability ... See MoreSee Less
0 CommentsComment on Facebook
Abi takes on the Highland Swing 💙
If you read our post about our Patient Liaison Officer Amy’s bungee jump last August, you’ll know the Clapp family went all in on their adventure to Scotland.
On the same adrenaline-filled day, Abi, an adult service user with BBS, took on the Highland Swing to raise money for BBS UK. The video shows Abi stepping off the bridge and swinging high above the River Garry . It was a huge moment that took real courage!
Her sisters Sienna and Beth also braved the Highland Swing, while her brother Josh faced the bungee jump, all in support of BBS UK.
Thank you, Abi, and the whole Clapp family for getting involved and helping make a difference for people living with BBS. We’re so proud of you.
Video description: Abi is shown in a safety harness on a bridge before dropping into the Highland Swing and swinging back and forth above the River Garry.
If you’re thinking about fundraising for BBS UK, get in touch at [email protected] ... See MoreSee Less
0 CommentsComment on Facebook
BBS UK Service User Hamza was recently featured on Birmingham Metropolitan College's Facebook page!
Hamza created a video sharing a typical day in his life while talking about his experiences of living with Bardet-Biedl syndrome (BBS) and ADHD.
The video follows Hamza through his day, from attending college and eating out at a restaurant to going to the gym and more.
Hamza's positive attitude, determination and resilience are truly inspiring, and we're incredibly proud to have him as part of the BBS community. He faces the challenges associated with living with BBS while embracing life to the fullest, highlighting the importance of the right support, accessible technology and a strong network of people around him.
Follow the link below to the original post to watch and listen to the video! ... See MoreSee Less
2 CommentsComment on Facebook
We'd like to give our thanks to the members of Winchburgh Warriors Netball Club who recently held a raffle and bake sale, with all proceeds kindly being donated to us here at BBS UK.
It was a lovely surprise to receive the donation.
The club chose to fundraise for us in support of a family whose daughter lives with Bardet-Biedl syndrome, and we are incredibly grateful for their kindness and thoughtfulness.
Thank you to everyone involved for supporting the BBS community. Your generosity will help us continue to be there for families living with BBS.
💙 ... See MoreSee Less
0 CommentsComment on Facebook