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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.
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
🏃♀️ Run or walk with us at the Vitality London 10,000! 🏃♂️🚶♀️
We’re looking for runners and walkers to join Team BBS UK this September in one of the most iconic 10k events in the country.
Whether you’re living with #BardetBiedlSyndrome, know someone who is, or want to help raise funds and awareness for the BBS community, this is your chance to make an impact and represent BBS UK on the move.
This is an inclusive event:
✅ You can walk or run the 10k at your own pace
✅ The route is flat and scenic, through central London
✅ Guide runners get a free place
✅ Accessible toilets available
✅ Sensory Calm Space, Parent and Child Space (for breastfeeding, pumping, or entertaining little ones), and a Multi-Faith Prayer Space at the Finish Area
📅 Vitality London 10,000
📍 Central London
🔗 londonmarathonevents.co.uk/london-10000/course
💬 Interested? Email us at [email protected]
We can’t wait to run, walk, and connect with our amazing community on race day! 💙 ... See MoreSee Less
The Course
londonmarathonevents.co.uk
Before Event Day, familiarise yourself with the route and what’s on offer, from toilets to pacers.1 CommentsComment on Facebook
🎉 It’s #VolunteersWeek — and we’re sending a huge THANK YOU to every one of our amazing volunteers!
Whether you’re sharing your lived experience, running fundraising events, supporting us at events, or working behind the scenes — you are the heartbeat of BBS UK.
That includes our dedicated trustees who help keep the charity running legally and ethically, our Service User Advisory Group who help shape our services with insight and lived experience, and our Ireland Regional Group volunteers who bring the community together and make local support happen.
Your time, energy, and passion help us reach further, support more families, and strengthen the BBS community in ways we couldn’t do without you.
We're so grateful that you're supporting the BBS UK community 💙
#ThankYouVolunteers #BBSUK #VolunteersWeek2025 ... See MoreSee Less
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Parents of children living with #BardetBiedlSyndrome often have very little time to look after themselves while managing the complex needs of their child.
We know how tough it can be to prioritise your own wellbeing. That’s why we’re sharing this opportunity from LOOK UK:
The Healthy Parent Carer Programme is a free, 12-week online course created by parent carers, for parent carers. It’s designed to offer practical tools for improving health, wellbeing, and resilience while caring for a child with a visual impairment.
Two online cohorts are available:
📅 Autumn 2025
📅 Spring 2026
You can find more details and sign up here: buff.ly/AQrFyUAAre you a parent carer of a blind or partially sighted child? Do you find it hard to focus on your own well-being while caring for others?
We understand, and you're not alone.
The Healthy Parent Carer Programme is a free, 12-week online course designed by parent carers for parent carers. It helps you explore simple, evidence-based ways to boost your wellbeing, improve your health, and build emotional resilience.
We have two cohorts available for parent/carers to join:
- Autumn Cohort: Starts September 2025
- Spring Cohort: Starts January 2026
Sessions are run weekly online by trained facilitators who are also parent carers. It’s relaxed, empowering, and designed to fit around your busy life.
👉 Find out more and sign up here: buff.ly/AQrFyUA ... See MoreSee Less
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