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![[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.
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.0 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
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💪 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
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A reminder that we have 7 Slimming World on Referral vouchers available, providing 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.0 CommentsComment on Facebook
📢 Reminder — The Retina UK Professional Conference is coming up next month, and BBS UK will be there!
📅 Friday 19th September 2025 in London
We’ll be educating medical and vision professionals about what Bardet-Biedl syndrome is, helping them to better understand the condition and support those affected.
If you haven’t booked your place yet, there’s still time! The full schedule is now available along with how to book our their website:
... See MoreSee Less
Retina UK Professionals’ Conference 2025
retinauk.org.uk
The Retina UK Professionals’ Conference is aimed at anyone who works with our community in a professional capacity.0 CommentsComment on Facebook
Don’t miss your chance to take part!
Registration for the following BBS UK Challenge Events is closing soon:
🗓️ Southampton 10k – closes Thursday 21st August
🗓️ Derbyshire Trail Runs (15 and 21km) - closes Friday 22nd August
🗓️ Great Scottish Run 10K (Glasgow) – closes Friday 12th September
🗓️ Plus more events taking place in September and October
If you've been thinking about signing up, now’s the time!
These events are a brilliant way to challenge yourself while raising support for families living with Bardet-Biedl syndrome.
💙 Thank you to everyone who’s already registered—you’re making a real difference.
👉 Visit our Support Us page to register before the deadlines:
🔗 bbsuk.org.uk/support-us
Need a hand choosing or signing up? Email [email protected] ... See MoreSee Less
Support Us - BBS UK
bbsuk.org.uk
When you choose to give your time or donations regularly to our charity, you become a part of the amazing group of people, our Friends of BBS UK, who make our0 CommentsComment on Facebook
We have 7 Slimming World on Referral vouchers available, providing 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.0 CommentsComment on Facebook
A Run Like No Other 🏙️
The London Landmarks Half Marathon is more than a race—it’s a journey through the heart of the capital. 13.1 miles of iconic views, hidden corners, and amazing atmosphere.
Thinking of joining in? Run for BBS UK and support families living with Bardet-Biedl syndrome 💙
📅 Limited places available— Act now to avoid missing out!
Head to our Support Us page to find out more and sign up:
🔗 bbsuk.org.uk/support-us
Questions? Email us at [email protected] – we’d love to hear from you. ... See MoreSee Less
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Exciting News! BBS UK has teamed up with Run for Charity to bring a huge range of challenge events, making it even easier to raise funds to support our work💙
From 5Ks and Marathons 🏃♀️ to Tough Mudders and Bungee jumps 🪂 to Inflatable Fun Runs 🏰 — you choose the challenge and the location to suit you.
📍 Find your perfect event
✅ Book your place
💸 Start fundraising today!
🔗 bbsuk.org.uk/support-us
Can’t see the event you’re looking for?
📧 Email: [email protected]
Every step, every leap, every laugh brings us closer to stronger support for our community 💪
Video description: The BBS UK Support Us page. Choose your challenge. Each section has a headline and a photo. Sections are London Landmarks Half marathon, marathons and half marathons, 5 and 10k, Tough Mudders, Family Friendly events, Walking at your own pace, Bungee jumps, Choose your own challenge and Got Your Own place? ... See MoreSee Less
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