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16 June 2025
We’re also delighted to welcome Alis Stevens as the newest member of the BBS UK Advice Service team.
16 June 2025
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.
02 June 2025
It’s #VolunteersWeek — and we’re sending a huge THANK YOU to every one of our amazing volunteers!
30 May 2025
We’re thrilled to share that BBS UK has been awarded a 3-year grant from BBC Children in Need!
29 April 2025
Your thoughts matter to us! Please take a few minutes to complete our conference 2025 evaluation form.
15 April 2025
Delegate Information Packs now available for the BBS UK annual conference on Friday 25th to Sunday 27th April 2025.
07 April 2025
Meet our speakers, exhibitors and sponsors for the 32nd BBS UK Annual Conference!
25 November 2024
Welcome to our new Chair, Emma Hughes! Emma was voted in as Chair at the Annual General Meeting on 9th November 2024.
03 October 2024
Registration open for the BBS UK Annual General Meeting on 9th November 2024.
24 May 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!
16 April 2024
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.
16 April 2024
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.
13 September 2023
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.
08 August 2023
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.
12 May 2022
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.
31 March 2022
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.
Be a part of the conversation about RNIB's future transcription service
RNIB is inviting individuals with experience related to sight loss to participate in discussions about the future of their personal transcription service, which converts documents into accessible formats.
They seek input on current needs, how users manage outside their services, and the organization's future role.
Virtual meetings will be held in July, August, and September. Interested individuals can find out more and register their interest via the following link:
forms.office.com/e/TrdyksdtBw by 2 July 2025 to be considered for participation. ... See MoreSee Less
forms.office.com
forms.office.com
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We share the concerns of RNIB and many other charities that support people living with sight loss and other disabilities. If you can, please consider sending the pre-written email to your local MP. All you need to do is fill in your postcode and the rest is done for you.We feel greatly let down by today’s Universal Credit and Personal Independence Payment Bill.
Ministers heard loud and clear that cuts to essential health and disability benefits would push many disabled people into poverty and further from work.
Instead of changing course, the UK Government is continuing with its damaging plans, without all the necessary impact assessments and an opportunity for disabled people to share their views.
The bill’s sweeping cuts to health and disability benefits could significantly affect blind and partially sighted people.
Thousands who require Personal Independence Payment (PIP) to live independent lives will not meet the new tightened criteria if the plans go ahead.
The only small concession in today’s bill is to allow current PIP claimants who no longer qualify 13 weeks additional time before they lose the support they are receiving.
This is no substitute for the loss of an average of £4,500 a year which some claimants will experience.
MPs are set to vote on these plans within the next two to three weeks.
We will be doing all we can to stop these cuts and urge MPs to vote against the plans.
The more that MPs hear from you, their constituents, the more they will be aware of the impact the cuts would have on blind and partially sighted people, and the more likely they are to raise concerns in Parliament.
Send your MP an email now: rnib.in/PIP25Fb
[Image description: "Today’s Universal Credit and Personal Independence Payment Bill proposes sweeping cuts to benefits that could affect many blind and partially sighted people." Graphic with black text on a white background.] ... See MoreSee Less
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🎉 We’re excited to share that all 4 places for the London 10K are now filled – thank you so much to everyone who showed interest in running for BBS UK! 💙🏃♀️🏃♂️
If you didn’t get a spot this time, there are still plenty of ways to get involved:
✅ Sign up to any race yourself and fundraise for BBS UK—we’d love to have you on the team!
📄 Our "Fundraise for BBS UK" guide (linked in bio / attached / available on our website) walks you through setting up a JustGiving page.
📧 Need help or want to chat ideas? Email us at [email protected].
💡 We’ve also got charity places in future races, so make sure you’re on our mailing list to hear about them first—just drop us a message at [email protected] to be added!
Thanks again for all your support. Let’s keep the energy going! 💪 ... See MoreSee Less
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We'd like everyone to give a warm BBS UK welcome to our new team members: Beatrice and Alis!
We've been able to create two much needed roles within our Advice Service thanks to a generous legacy donation from Jackie Farrington's estate.
Beatrice and Alis will be working alongside our Advice Service Manager, Rebecca Perfect, lending their expertise and experience to the BBS community.
The Advice Service help individuals with BBS to access the local support they need across health, education, and social care, including negotiating support packages, helping with housing issues and benefits applications, and with future planning.
Photo 1 text reads: Beatrice Adeogun, Advice Worker. Beatrice has a background as a support worker and is also a qualified social worker. She brings frontline experience of supporting individuals and families through complex challenges. Her personal experience of being a parent to a disabled child gives her a deep understanding of the needs of families navigating disability and social care systems.
Quote: “I'm so excited to be joining the team and looking forward to meeting the community, learning more about the amazing work being done and supporting people in anyway I can.”
Photo 2 text reads: Alis Stevens, Advice Worker. Alis started teaching in 2010 and spent years in a South Bristol school before stepping into a dual role as a Family Support Worker. Passionate about understanding and helping families, she built deep connections and developed expertise in supporting pupils with both diagnosed and undiagnosed SEN. In her final teaching year, she worked in an SEN base, supporting students and families across all aspects of life.
Quote: “I am excited to join the team and am looking forward to supporting service users and join the community!" ... See MoreSee Less
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#SightVillage Central (Birmingham) will return to the Eastside Rooms over two days: Monday 7th and Tuesday 8th July 2025.
Event Details:
• Monday: Doors open at 10:00 AM to 4:00 PM
• Tuesday: Doors open at 9:30 AM to 3:30 PM
As always, the event is free to attend, and a wide range of exhibitors will be present, with a full list available on the website!
Sight Village is an exhibition for the blind and low-vision community, showcasing the latest in technology, products, and support services.
Tickets are now available through the website: ... See MoreSee Less
Sight Village Central 2025 - Queen Alexandra College
www.qac.ac.uk
A national college for the blind, visually impaired and learners with Asperger Syndrome and/or Autistic Spectrum Disorders.0 CommentsComment on Facebook
🦸♂️ It’s #CarersWeek — and at BBS UK, we’re shining a light on the everyday heroes behind the scenes.
Carers are the lifeline for people living with #BardetBiedlSyndrome. They manage personal care, support education, coordinate endless medical appointments, juggle transport, navigate complex and confusing benefits and council systems — and that’s still not the full list.
It’s a 24/7 role with no pause button.
We appreciate you. Thank you for everything you do 💙
#BBSUK #CarersWeek2025 #ThankYouCarers #UnpaidCarers ... See MoreSee Less
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Conference recordings are now available on our YouTube channel: www.youtube.com/@bardet-biedlsyndromeuk2209/playlists
A few notes about two of the videos:
1. Planning for the Future – Wills, Trusts and Decision Making
This video will only be available for two months. Because it contains legal information, it’s important to note that advice in this area can quickly become outdated as laws and policies change.
Renaissance Legal have asked us to limit the availability of this recording to ensure that viewers are not relying on information that may no longer be current. We strongly encourage you to seek professional legal advice for guidance that reflects your individual circumstances.
You can also watch the full presentations as well as other seminars for free through Renaissance Legal’s own events. Visit their website for more information:
renaissancelegal.co.uk/event-seminar/
2. Communication at a Cellular Level: An Accessible Update
This was a highly tactile and hands-on session, which may not fully translate in the recording. However, we’ve shared it in case you still find it useful.
We hope you enjoy the recordings and find them valuable!
#BBSUKConf2025 #BardetBiedlSyndrome ... See MoreSee Less
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51.8km, over 1,000m of elevation, and seriously tough terrain—but he did it! All while raising awareness of Bardet-Biedl syndrome and the work we do to support individuals and families living with #BardetBiedlSyndrome.
Thank you so much, Andre, for taking on this incredible challenge and for choosing to highlight how vital our work is. We’re so grateful for your support—and your strength!
Here's some beautiful photos of Andre running the Ultra X Finland 50km.
If you feel inspired to take on a fundraising challenge, contact us at [email protected] and we'll help to get you started! ... See MoreSee Less
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At our recent conference, Philip Warford from Renaissance Legal—experts in legal advice for families and carers of disabled and vulnerable people—gave a powerful talk on the importance of planning for the future.
Philip has asked us to share Renaissance Legal’s online events schedule with the BBS community. There, you can watch his full presentation on wills, trusts and future planning, and explore other seminars on key topics like Universal Credit.
Check out the events here:
🔗 ... See MoreSee Less
Events for Families & Carers of Disabled & Vulnerable People
renaissancelegal.co.uk
Discover our legal clinics & seminars supporting organisations like Brighton & Hove Carers Centre, Amaze & Age UK. Contact us for events or availability!0 CommentsComment on Facebook