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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.
Our next monthly chat for adults with BBS will be held on Zoom on Wednesday 5th November, 7:00pm - 8:00pm.
The main topics will be travel and holidays 🚄 🏖
We'd love for more of our community to come and join in the fun, so if you're not already on the mailing list, please email [email protected] and we can then send you the link to join.
Hope you can join us! ... See MoreSee Less
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As part of Ireland Information Day, a group of children, young people and their parents/carers went to Dublin Zoo.
Our amazing volunteers Erica and Stacie took these lovely photos, showing the families enjoying the animal enclosures and spending quality time together as part of the BBS Ireland family.
Despite the cold temperature, the group came back happy, refreshed and full of energy!
Can you spot the hippo in the background of one of the photos?
#bardetbiedlsyndrome #bbs #charity #volunteering #dublin #dublinzoo #disability #raredisease #rarecondition #visualimpairment ... See MoreSee Less
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On Saturday, Team BBS UK and the Ireland Regional Group put on a fantastic Information Day for people living with BBS and their families.
People travelled from across Ireland, Northern Ireland, Wales and England to come together in Dublin for a day of learning, community spirit and hope for the future of healthcare services in Ireland for those living with BBS.
We want to thank all of the speakers, the volunteers and BBS UK staff and trustees who attended for giving up their Saturday. We couldn't have done it without the dedication and passion from all involved.
Here's a few photos from the day, with more to come over the next week, including photos from the children and young people who had a blast at Dublin Zoo! ... See MoreSee Less
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Team BBS UK will be flying to Dublin tomorrow to prepare for the Ireland Information Day on Saturday 11th October!
We're excited to host a wonderful day of learning and community with a great line-up of speakers talking about research into BBS, the progress of a multi-disciplinary BBS clinic in Ireland, and much more!
The children and young people will have an adventure at Dublin Zoo with a private tour and a chance to socialise with their peers who also have BBS.
If you're joining us this weekend, we can't wait to see you there! ... See MoreSee Less
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Remember it's #BBSGlobalDay tomorrow!
Join together with the worldwide BBS community at the free online webinar at 3:30pm.
You can hear research updates from Prof Phil Beales, Professor Arlene Drack, Dr Mieke Van Haelst and more!
Scan the QR code in the poster or follow the link in the comments below to register.
We're stronger together! ... See MoreSee Less
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We'd like to share Learning Disability Today's website which is packed full of news about learning disabilities and autism.
By signing up for their free website, you can now get:
✅ Full access to In Focus digital magazines (for a limited time)
✅ Free webinars – plus recordings of past ones you can watch anytime
✅ A new section with resources for people with learning disabilities, autistic people, carers and professionals
✅ A directory of organisations offering support and useful products
✅ Easy-to-use accessibility tools across the site
✅ A fortnightly email newsletter to keep you updated
👉 Join here: ... See MoreSee Less
Learning Disability Today
www.learningdisabilitytoday.co.uk
Supporting professionals working in learning disability and autism services1 CommentsComment on Facebook
If you're feeling confused or unsure about welfare benefits, you can attend this free online webinar from Renaissance Legal. They will be giving accurate, up to date guidance on what you or the person you care for might be entitled to. Follow the link in the original post to registerIf you are a parent or carer of a person with disabilities or additional needs you may be concerned about navigating the complicated benefits system the right way.
Our specialist benefits team will explore and answer some common benefits questions to provide parents and carers with practical, helpful advice and guidance.
Book a place here - renaissancelegal.co.uk/event-seminar/welfare-benefits-webinar/ ... See MoreSee Less
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They did it! 🏅
At this year's Vitality London 10,000 we were truly grateful to have 4 fantastic runners taking part in the race, to raise funds and awareness for BBS UK and for BBS.
Our very own Tonia Hymers tackled the race with a huge smile on her face.
Experienced runners Octavia and Luke barely broke a sweat!
Trustee and service user Bilaal Ali won his first 10k medal and is already asking himself "what can I do next?"
It's not just about raising money, it's about showing the world that people living with BBS and visual impairments can take on huge challenges with the right support and community around them.
So far, the team have raised a staggering £2500! These funds go directly to the charity's running costs, helping us to support people living with BBS and their families.
If you'd like to contribute, you can follow the link in the comments below to donate.
And if you fancy taking on a challenge for us, get in touch at [email protected]
💙💙💙💙 ... See MoreSee Less
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It's #BBSGlobalDay 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.
On Saturday October 4th at 3:30pm, you can join the international BBS community for a free online webinar.
You'll hear from speakers such as our very own Professor Phil Beales, as well as Professor Arlene Drack who spoke at last year's annual conference.
Scan the QR code or follow the link in the comments to register for the free online webinar. ... See MoreSee Less
1 CommentsComment on Facebook