News & Events
BBS UK on Facebook
Latest News
![[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.
Thank you to Stefan for sharing his story at this year’s conference.
Living with Bardet-Biedl syndrome (BBS), Stefan didn’t become a confident independent traveller overnight. In this clip, he shares advice for anyone with sight loss who’s thinking about taking that first step: start small, build your confidence, and keep going.
If you or someone you know is navigating BBS and wondering about independent travel, Stefan’s words are a reminder—you don’t have to do it all at once. Progress comes step by step.
You can watch Stefan’s full interview on our YouTube channel (link in comments), along with recordings from past conferences and our newsletters.
🎥Video description: A man seated with a microphone speaks to an audience. ... See MoreSee Less
1 CommentsComment on Facebook
Manchester Rare Conditions Centre is inviting patients living with BBS, carers, and family members to join the We R Rare Steering Group.
Do you…
🔹 Live in Manchester or the North-West?
🔹 Want to help shape the future of healthcare and research?
By joining, you’ll:
✅ Influence research that reflects real-world needs
✅ Advise on services to better support families
✅ Raise awareness of the challenges faced every day
They are especially keen to hear from men and people from diverse backgrounds so the group reflects the full range of lived experiences.
📅 Deadline to apply: Sunday 28th September 2025
🌐 Find out more and complete the expression of interest form here: www.mrcc.org.uk/engagement-advocacy/we-r-rare
💜 Rare voices matter. Add yours. 💜 ... See MoreSee Less
We R Rare - Manchester Rare Conditions Centre
www.mrcc.org.uk
Did you know that rare conditions affect more than 3.5 million people across the UK? Or that two-thirds of rare conditions can cause chronic disability? What about the fact that most rare conditions d...0 CommentsComment on Facebook
Vitality London 10,000 – Sunday 28 September 2025
We have four runners taking part, including our Operations Manager, Tonia Hymers and trustee Bilaal Ali!
After the race, there's a free Vitality Wellness Festival in Green Park (open to everyone). Highlights include:
- Yoga sessions (Hotpod Yoga & Our Parks)
- New Balance Bra Bar (fittings, coffee, DJ)
- Sports tasters with England Netball, London Youth Games and The FA
- Skills & challenges with Pro Touch SA and Treasure Sports Clubs
- Kids’ crafts and The Daily Mile freebies
- Cricket with MCC and karate with Olympic Karate Inc.
More info: www.londonmarathonevents.co.uk/london-10000/vitality-wellness
Come and cheer our team, then enjoy the festival! ... See MoreSee Less
Vitality Wellness
www.londonmarathonevents.co.uk
Here's what to expect at the Vitality Wellness Festival in Green Park. It's free and includes activities and taster sessions for people of all ages to try!0 CommentsComment on Facebook
We’re calling on our marathon and half marathons runners!
There are tons of running events all across the UK and we’re crossing our fingers that some of our incredible BBS UK community will sign up, take on the challenge and fundraise for us!
Chepstow, Bath, Leeds, Brighton, Manchester, Edinburgh…there’s an event close wherever you are.
Head to the Run For Charity website to find out more and sign up:
🔗 tinyurl.com/2patpdm7
👉 Can’t find the event you’re after on our website? Tell us — we’ll do our best to make it possible.
We'll help you with setting up your fundraising page, send you BBS UK t-shirt and a fundraising pack when you pledge to raise over £100.
Let's get running! ... See MoreSee Less
0 CommentsComment on Facebook
💪 We need YOU to take on a challenge for BBS UK!
Now’s the time to sign up, fundraise, and tackle that challenge you’ve always wanted to do — whether it’s a 5k run, marathon, bungee jump, Tough Mudder, or something completely different.
Every mile, every jump, every muddy step helps us continue supporting the BBS community and raising awareness of Bardet-Biedl syndrome.
Head to our Support Us page on our website to find out more and sign up:
🔗 bbsuk.org.uk/support-us
👉 Can’t find the event you’re after on our website? Tell us — we’ll do our best to make it possible.
This is your chance to make a real difference. Will you take it on?
📩 Drop your questions in the comments or email [email protected] ... See MoreSee Less
0 CommentsComment on Facebook
👏 Give it up for Bilaal Ali!
We’re excited to share that BBS UK trustee Bilaal has signed up for the Vitality London 10K on Sunday 28th September — raising funds and awareness for families affected by Bardet-Biedl syndrome (BBS).
✨ About Bilaal
Bilaal lives with BBS and is visually impaired. He’s also a trustee, a passionate sports fan, and now—an incredible fundraiser. Training with his local running club, he’s found encouragement and connection, and he’s determined to show others living with BBS that with support and perseverance, goals are always within reach.
🗣️ “I’m running the London 10K to be a role model to any other adult going through sight loss.” – Bilaal
💙 We’re so grateful to Bilaal for stepping up. Join us in cheering him (and our other runners) on all the way!
👉 You can support Bilaal by making a donation to JustGiving using the link in the comments.
Or leave him some encouragement in the comments below!
Inspired to take on your own challenge? Visit our Support Us page on the BBS UK website to browse events and sign up.
🎥 Video description: Bilaal speaks directly to the camera, with a clip of him using a cane to walk and smiling. ... See MoreSee Less
1 CommentsComment on Facebook
Final chance to claim a free Slimming World membership!
The membership provides free 12-week membership to adults (patients or parents) who want to lose weight.
To access the Scheme, call the Slimming World on Referral team on 01773 302487 (BBS members only, first come, first served)
❗It is important that members have a local group that they can access weekly, and will have support if needed with meal planning and cooking.
Use your postcode on the Slimming World website to find out if you have a group local to you: ... See MoreSee Less
Slimming World Groups | Find a Weight Loss Group Near Me
www.slimmingworld.co.uk
Start your journey to a slimmer, healthier you today! Search for your local Slimming World groups here and get in touch with the Consultant to find out more.1 CommentsComment on Facebook
📢 Calling all men living with BBS and fathers of children with BBS!
BBS UK is inviting you to join the Service User Advisory Group (SUAG). This is a great chance to ensure your perspectives are represented and valued in our community.
SUAG already has 9 members across the UK and Ireland. By joining, you’ll help strengthen the group and make sure men’s and fathers’ voices are heard.
What SUAG does:
- Reviews BBS UK projects and services
- Provides feedback to improve services
- Ensures the views of people affected by BBS are heard
- Helps shape BBS UK’s future plans
👨 Open to:
Men aged 16+ living with BBS
Fathers of children with BBS
✅ Must regularly use BBS UK services
✅ Must be able to attend at least 2 virtual meetings per year
📧 Apply by emailing [email protected]
Your voice matters — help shape the future of BBS UK 💙 ... See MoreSee Less
0 CommentsComment on Facebook
💪 Choose your challenge, make a difference!
Whether it’s a 5k run, marathon, bungee jump, Tough Mudder (or something else entirely!), there’s a challenge event for everyone — and every step, leap, and climb helps raise vital funds for BBS UK.
Don’t see your perfect event on our website? Let us know — we’ll do our best to make it happen.
Got questions? Drop them in the comments or email [email protected]✉️ ... See MoreSee Less
0 CommentsComment on Facebook