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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.
It's #TrusteeWeek and we want to say a massive thank you to our trustees!
Emma, Chet, Tazeem, Dianne, Shehla, Rachael, Liam, Gareth and Bilaal – we're incredibly grateful for the time, care and expertise you dedicate to the BBS community.
Being a trustee is a voluntary role, but it carries huge responsibility. Trustees are the people who guide our charity’s direction, make key decisions, ensure we’re financially sound, and help us stay true to our mission. They give their time and skills freely to help us thrive – and we couldn’t do it without them.
Thank you for everything you do 💙 ... See MoreSee Less
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📣 Dear Members of BBS UK,
A reminder that our Annual General Meeting (AGM) is taking place this Saturday — and we’d love you to join us! 💙
📅 Date: Saturday 8th November 2025
🕙 Time: 10:00am – 11:00am
💻 Where: Online via Zoom
This is an important time for our charity — we need your support to make sure the meeting can go ahead, and to help shape the future of BBS UK together.
By joining us, you’ll:
✅ Help us reach the quorum needed for the AGM to take place
✅ Hear updates on our work and achievements
✅ Take part in key decisions that guide the future of BBS UK
All details, including how to register, the agenda, proxy notice, and our 2024–25 Annual Report and Accounts, can be found on our website by following the link in this post.
We also have three trustee vacancies, and we’re looking for passionate people to join our Board — especially those with skills in finance, legal (particularly charity law), marketing/media/PR, fundraising, or HR.
Interested? Email [email protected] to find out more.
Let’s come together, celebrate our progress, and build a stronger future for the BBS community. 💙 ... See MoreSee Less
Registration open for the BBS UK Annual General Meeting on 8th November 2025 - BBS UK
bbsuk.org.uk
Registration open for the BBS UK Annual General Meeting on Saturday 8th November 2025.0 CommentsComment on Facebook
We're still talking about our Ireland Information Day in Dublin last month!
And we wanted to say a special thank you to all of our speakers who volunteered their time to travel to Dublin and share their expertise and experiences with the BBS community.
Here are some photos of our lovely speakers for you.
[Photos in order: Prof Phil Beales, Gillian Stafford, Eithne Walsh from Féach, Jade McCormack from @fightingblindness, Sarah Flack and Patrick Morgan] ... See MoreSee Less
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The PM Society is a not-for-profit organisation that believes excellent healthcare communications leads to better outcomes for patients.
They would like to hear from patients with rare diseases which includes BBS who have transitioned from children to adult services. If you would like to complete the short survey, you can follow the link below:Are you living with a rare disease? Have you experienced the move from paediatric to adult healthcare services, or started managing your condition more independently?
We want to hear from you! We are looking to understand the experiences of people living with rare conditions in the UK who have experienced the transition from paediatric to adult care. If you have 5 minutes, please help us by filling in this survey: forms.cloud.microsoft/Pages/ResponsePage.aspx?id=DQSIkWdsW0yxEjajBLZtrQAAAAAAAAAAAAO__dDAWSZUQVhQ...
Your responses will help to shape a new resource designed to support other teens and young adults with rare conditions going through the care transition.
#RareDisease #PaediatricCare #AdultCare #PatientVoices Spinal Muscular Atrophy UK, Myaware Fighting Myasthenia Together, Ataxia UK, Acrodysostosis - support and research, Cure and Action for Tay-Sachs - CATS Foundation, Dravet Syndrome UK, Huntington's Disease Association, MND Association, Muscular Dystrophy UK, Prader-Willi Syndrome Association UK ... See MoreSee Less
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It's Sight Village London on Tuesday 18th and Wednesday 19th November!
The event offers people with VI to discuss and engage with new innovations in a sensory-rich environment, where you can see, touch, and fully experience products and services.
You can reserve your free ticket and find out more information by visiting the website: ... See MoreSee Less
Sight Village London 2025 - NEW VENUE - 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
Free Online Workshop for Adults Living with BBS
🧠 You and Your Emotional Wellbeing
📅 Tuesday 18th November 2025
🕖 7.00pm – 8.30pm
💻 Join us on Zoom
BBS UK, in partnership with Rareminds invites you to a supportive and interactive workshop exploring the emotional impact of living with BBS.
Led by specialist counsellor Rebecca Hargreaves, the session will cover:
✨ Building relationships with healthcare teams
✨ Managing anxiety and uncertainty
✨ Practical tools for emotional wellbeing
📧 Reserve your FREE place now: [email protected]
Let’s talk, share, and support each other 💙 ... See MoreSee Less
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It's one week until our next monthly social chat for adults living with BBS!
We'll be discussing all things travel and holiday related.
If you'd like to sign up, please contact [email protected]
We hope you can join us! ... See MoreSee Less
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Microsoft's Disability Answer Desk is where customers with disabilities get support with Microsoft Office, Windows and Xbox. This could be on your laptop, PC, phone or tablet.
You can even ask for help with third party applications on Microsoft devices.
The team are trained to support people with a variety of disabilities. These include vision loss, neurodivergence, learning and hearing.
We really recommend contact the support team if you have any problems or don't know where to start with your device or with an app.
You can contact them through:
- The Be My Eyes app
- through web chat by following the link in this post to their website
- a phone call by ringing the free number 0800 026 0584 ... See MoreSee Less
Disability Answer Desk Support | Microsoft Accessibility
www.microsoft.com
Explore the Microsoft Disability Answer Desk today. Our accessibility answer desk feature provides support for all of our assistive technologies.0 CommentsComment on Facebook
Trustee Rachael Zimbler and her husband, volunteer Richard attended Walthew House's See Hear open day event in Stockport earlier in the month.
Rachael is the Chair of Walthew House, a charity that provides practical and emotional support for people in Stockport living with sight or hearing loss.
They shared resources about Bardet-Biedl syndrome and information about the work we do at BBS UK.
Thank you to them both for representing BBS UK! 💙 ... See MoreSee Less
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