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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.
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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🎉 We’re thrilled to share that BBS UK has been awarded a 3-year grant from BBC Children in Need!
This vital funding will support our ongoing work with children and young people living with Bardet-Biedl syndrome (BBS) across the UK.
BBS is a rare genetic condition, and because families are spread far and wide, our services are designed to reach every corner of the country—whether that’s through in-person visits, online support, virtual events, or local networks like our Ireland Regional Group.
From the moment of diagnosis through every stage of life, we’re there to offer practical help, emotional support, and community connection.
Thank you, BBC Children in Need, for believing in our mission and helping us make a real difference. 💙 ... See MoreSee Less
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RNIB Connect Radio attended our #bbsconf2025 where they interview Professor Phil Beales, Dr Elizabeth Forsythe and also our Chair Emma Hughes.
You can listen to the BBS UK Annual Conference 2025 playlist for free at anytime through the RNIB Connect Radio website.
audioboom.com/playlists/4635743-bbsuk-annual-conference-2025
Stay tuned! Video recordings of the conference sessions will be available in June. In the meantime, check out our YouTube channel for past conference recordings. ... See MoreSee Less
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🎉 Want to help raise money for BBS UK? 🎉
Want to make a real difference for people living with #BardetBiedlSyndrome? It’s easy — set up your own JustGiving fundraising page in just a few steps!
Whether it’s a walk, bake sale, marathon, or something totally original — your fundraiser matters. Here’s how to get started:
💙 Steps to create your JustGiving page:
Visit our page: www.justgiving.com/lmbbs (link in the comments)
Click “Fundraise for us”
Sign up for a free account or login to your existing account
Choose whether your page is in memory of someone
Select your activity type (e.g. walk, bake sale, challenge)
Name your event – date is optional if it runs over multiple days
Set your fundraising goal — whatever feels right for you
Add a personal message — share why you're supporting BBS UK
Add a photo or video (or keep the BBS UK logo)
Review and click “Launch my page”
Share it with your community 🫶
All donations go directly to BBS UK to support people affected by BBS.
Got questions? Drop us a message at [email protected]— we’re happy to help!
Thank you to all of our community fundraisers! ... See MoreSee Less
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Sight Village Glasgow – Just one week to go!
Sight Village, the UK’s leading exhibition for blind and partially sighted people, is coming to Glasgow next week – and it's at a brand-new venue!
📅 Wednesday, 21st May 2025
🕤 9:30 AM – 3:30 PM
📍 Glasgow Science Centre, 50 Pacific Quay, Glasgow G51 1EA
This free one-day event is a great opportunity for anyone living with sight loss to explore the latest accessible tech, support services, and products – all under one roof. Expect hands-on demos, expert advice, and relaxed, informative talks from a wide range of exhibitors.
☕ Refreshments will be available from the Coffee Shop on site (ground floor of the IMAX).
🎟️ Entry is free, but booking is essential – grab your ticket now via Ticket Tailor by clicking the link below.
www.tickettailor.com/events/sightvillage/1480042
If you're based in or around Glasgow, don’t miss it!
#SightVillageGlasgow ... See MoreSee Less
Select tickets – Sight Village Glasgow 2025 – Science Centre
www.tickettailor.com
Sight Village is the UK's leading exhibition and an integral part of the blind and low-vision landscape, attracting thousands o...1 CommentsComment on Facebook
💙 50km for BBS 💙
We’re incredibly grateful to Andre for taking on a 50km ultra run to raise funds for BBS UK and support those living with Bardet-Biedl Syndrome (BBS). This is no small feat—and it speaks volumes about his commitment to making a difference.
Through his work at ALSA Ventures with Axovia Therapeutics, Andre got to know the challenges faced by the BBS community. Now, he’s turning that insight into action—running not just for science, but for the people behind it.
Thank you, Andre, for being such a powerful advocate. And thank you to everyone who’s donated so far—your support truly matters.
Let’s keep the momentum going. If you’re able to donate or share, here’s the link: shorturl.at/aAv64
We’ll be cheering you on every step of the way, Andre! 🏃♂️👏
#RareDisease #BBS #Fundraising #Ultra ... See MoreSee Less
Andre’s 50km Ultra Marathon for BBS UK (Ultra X Finland, 25 May 2025)
shorturl.at
Help Andre Badalyan raise money to support BBS UK0 CommentsComment on Facebook
📸 A shoutout to the guide dogs! #bbsconf2025
And finally, a special thank you to the wonderfully behaved guide dogs who assisted those attending the conference weekend. They certainly stole the hearts of some of our team! ... See MoreSee Less
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📸 Goal Ball UK – Sunday Morning Action! #bbsconf2025
Huge thanks to Kathryn Fielding from Goalball UK for an energetic and fun session learning the basics of Goalball at the BBS UK Annual Conference in Northampton! Such a great way to start our Sunday and to finish off the weekend with a bit of exercise 💪🏽
#bbsuk #bbsconf2025 ... See MoreSee Less
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📸 Family quiz and raffle on Saturday evening!
After the formal conference closed on Saturday and the children and young people came back from Drayton Manor, attendees had dinner and then gathered for a fun family quiz and raffle. We also put on a few films and brought arts and crafts for the children and young people to enjoy.
We were blown away by the generous donations to the raffle from everyone, including a very exciting 3-night stay at a luxury accessible holiday home. Thank you to everyone who donated and for purchasing raffle tickets.
#bbsuk #bbsconf2025 ... See MoreSee Less
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