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.
Want to support BBS UK and make a real difference?
Why not organise your own fundraiser or take on a challenge?
From school non-uniform days, to bake sales, coffee mornings, walking or running challenges, or even a quiz night, there are plenty of ways to get involved.
Find out how you can support us: bbsuk.org.uk/support-us/
Have an idea or want to get started? Get in touch at [email protected] ... See MoreSee Less
Support Us - BBS UK
bbsuk.org.uk
Be it donating to participate in a Fancy Dress Friday, or taking on a challenge event as a team to fundraise for BBS UK, there are tons of ways that your work0 CommentsComment on Facebook
Support people living with Bardet-Biedl Syndrome with a one-off donation to BBS UK.
Your contribution helps us continue delivering essential support, sharing information, and supporting families across the UK.
You can give whatever amount works for you, and every donation makes a difference.
Donate today through our website: ... See MoreSee Less
All the ways you can donate to BBS UK - BBS UK
bbsuk.org.uk
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.0 CommentsComment on Facebook
Are you a member of BBS UK?
BBS UK members are at the heart of everything we do. By becoming a member, you help shape the direction of the charity and strengthen the voice of the BBS community.
As a member, you can:
- Have a say in BBS UK decision-making
- Vote in trustee elections (and stand as a trustee)
- Access BBS UK projects and funds, including the IT Equipment Fund and Chris Humphreys Memorial Fund
Membership is completely free, so everyone who needs our support can take part.
You can also get involved in ways that suit you, from sharing feedback or personal experiences to fundraising or taking part in surveys. There’s never any pressure; we’ll support you if and when you want to be involved.
Follow the link to join or email [email protected] if you’re unsure whether you’re already a member. ... See MoreSee Less
Become a BBS UK Member - BBS UK
bbsuk.org.uk
Member must be UK citizens. If you would like to join our mailing list as a non-member, please contact us. If at anytime you wish to withdraw your membership,0 CommentsComment on Facebook
The RNIB are conducting a survey looking into the impact of the cost of living on people living with one or more eye conditions.
If you would like to complete the form, please follow the link below:
www.surveymonkey.com/r/XR558RL
If you need help completing the form, please email [email protected] ... See MoreSee Less
RNIB - Cost of Living Survey
www.surveymonkey.com
Take this survey powered by surveymonkey.com. Create your own surveys for free.0 CommentsComment on Facebook
💙 An incredible fundraising effort for BBS UK 💙
Theo, his family and school community have raised an incredible £2,768 so far following Theo's recent diagnosis of Bardet-Biedl syndrome (BBS).
Theo has been taking on a swimming challenge as part of his Scout badge, while 11 members of staff from his school completed a 10K run, battling the scorching son, alongside a bake sale. The fundraising doesn't stop there either, with Theo's mum, Keely, set to run the Royal Parks Half Marathon this October.
The family's fundraising journey actually began before Theo's diagnosis was confirmed.
Keely told us that BBS was a condition she had "never heard of" until Theo began undergoing investigations. While waiting for genetic testing, she says "I am someone who needs to be armed with knowledge", so she immersed herself in the BBS UK website, joined our Facebook community and spoke with our Advice Service Social Worker, Shirin.
That experience inspired the family to get involved. As Keely put it, "No matter whether my son is diagnosed with BBS or not, my eyes have been opened to a rare genetic condition which my family would like to support - hence the run."
We are overjoyed by the support shown to Theo and his family. Thank you to everyone who has donated, fundraised and helped raise awareness of BBS. 💙
Feeling inspired? Whether you're planning a run, a bake sale, a swimming challenge or something completely different, we'd love to hear from you. Contact [email protected] to start your fundraising journey. ... See MoreSee Less
7 CommentsComment on Facebook
VICTA are looking for 18 to 29 year olds to apply for their Changemakers programme!
When: September 2026 to August 2027
Who: 18 to 29 years
Location: Combination of virtual workshops and in-person sessions in London, Manchester and Milton Keynes. Support for travel costs will be provided for successful applicants.
Closing date: 3 August 2026
They're searching for enthusiastic individuals to bring their own personality to the VICTA channels, through video, audio, blogs and our podcast. If you'd like to create thought provoking content to challenge and inspire our audiences then this is for you.
Successful applicants will have the opportunity to attend workshops to help grow your skills - from the University Campus of Football Business in Manchester, to a social media workshop with inspiring social media disability advocates.
To apply for your place, complete the application before the closing date on 3 August.
www.victa.org.uk/vict.../changemaker-programme-2026/Join the VICTA Changemakers! Be part of a team of like-minded individuals and have your voice heard. We're looking for enthusiastic individuals to bring their own personality to the VICTA channels, through video, audio, blogs and our podcast. If you'd like to create thought provoking content to challenge and inspire our audiences then this is for you.
As a VICTA Changemaker you'll have the opportunity to attend workshops to help grow your skills - from the University Campus of Football Business in Manchester, to our social media workshop with inspiring social media disability advocates. We shape our workshops based on you and your interests meaning the programme changes and adapts across the year.
To apply for your place, complete the application before the closing date on 3 August.
www.victa.org.uk/victa-calendar/changemaker-programme-2026/
#VICTAChangemakers ... See MoreSee Less
0 CommentsComment on Facebook
🏃 Join Team BBS UK at the 2027 London Marathon!
Have you ever thought about taking on the London Marathon? This could be your chance!
The 2027 TCS London Marathon Disability Ballot is now open, giving people with disabilities and long-term health conditions the opportunity to apply for their own place in this iconic event.
We already have three fantastic Team BBS UK runners taking on the challenge in 2027, and we'd love for more members of our community to join them!
If you're successful in the ballot and choose to run for BBS UK, you'll be part of Team BBS UK, helping to raise awareness and vital funds to support people living with Bardet-Biedl syndrome. We'll be there to support you throughout your fundraising and marathon journey.
A few things to know:
🗓️ Applications close on Monday 24 August 2026.
💷 The entry fee is £79.99, payable if you're successful in the ballot.
🎽 This is a public ballot, so you'll be applying for and paying for your own marathon place.
📧 You'll also need to email proof of your disability to [email protected] as part of your application.
If you've been looking for a challenge or a way to make a real difference, we'd love to have you on Team BBS UK.
🔗 Apply here:
... See MoreSee Less
forms.cloud.microsoft
forms.cloud.microsoft
0 CommentsComment on Facebook
An important milestone for the Bardet-Biedl syndrome community
We are delighted to share the news that Catherine, 11, has become the first patient in the UK to receive retinal gene therapy for BBS10-associated retinal dystrophy.
This is a significant milestone and an encouraging step forward in the development of potential treatments for inherited retinal disease in Bardet-Biedl syndrome.
The treatment has been provided under an MHRA Specials Licence as part of a physician-led treatment protocol. Although this is not a clinical trial, patients receiving treatment will be followed for at least 12 months to assess its safety and gather further evidence.
It is important to understand that this treatment is specifically designed for retinal disease caused by mutations in the BBS10 gene. It does not treat the other features of Bardet-Biedl syndrome, nor is it suitable for retinal disease caused by other BBS genes.
We know many of our families will naturally wonder whether this treatment could be available for their child or family member. Our understanding is that at present, the programme is limited to a very small number of carefully identified patients, and eligibility has already been determined by the specialist clinical team leading the treatment. BBS UK has had no involvement in this process.
While today's announcement may not change treatment options for most people living with BBS, it is an important moment for our community. It reflects years of research, collaboration and commitment to developing precision therapies for rare genetic conditions, and represents another step towards improving the future for people affected by Bardet-Biedl syndrome.
We are delighted for Catherine and her family, and congratulate the clinical and research teams whose dedication has made this pioneering treatment possible.
As always, BBS UK will continue to work closely with clinicians, researchers and industry partners to keep our community informed as more evidence becomes available and this work continues to develop. ... See MoreSee Less
Girl, 11, becomes first in UK to receive innovative sight-saving gene therapy
news.sky.com
Catherine L'Estrange, who was diagnosed with a rare genetic condition, has been treated with "healthy copies" of a gene that were injected into her eye to preserve her vision.20 CommentsComment on Facebook
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