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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.
Philip Warford from Renaissance Legal will be joining us at the #BBSUKConference2025 to talk about how families with disabled members can plan for the future.
He'll be sharing his expertise on essential legal documents like wills, trusts, and powers of attorney—crucial tools for securing long-term stability and peace of mind.
This knowledge is invaluable in ensuring that vulnerable members of the BBS community are protected and provided for, both now and in the years to come. Don’t miss this important session!
If you haven't already, make sure to book onto the conference by visiting our website: bbsuk.org.uk/news-events/annual-conferences/#conference-2025 ... See MoreSee Less
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We're also very excited to welcome back Dr Elizabeth Forysthe to the #bbsukconference2025!
Dr. Elizabeth Forsythe is a leading expert in Bardet-Biedl syndrome (BBS), with 15 years of dedicated research and clinical experience. With a PhD in BBS and a passion for advancing care, Dr. Forsythe continues to shape the future of BBS research and treatment. 🔬
She will be providing an update on the Setmelanotide clinics for our audience.
If you haven't already, make sure to book onto the conference by visiting our website: bbsuk.org.uk/news-events/annual-conferences/#conference-2025 ... See MoreSee Less
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Countdown to Conference fundraising challenge!
The countdown to our BBS UK Conference on 25th April is well underway, and our Fundraising Challenge is heating up!
🎉 What’s in it for you?
• Pledge to raise £100 or more: Get a BBS UK T-shirt and fundraising pack!
• Be a top 3 fundraiser: Win a limited-edition BBS UK hoody!
💡 Need ideas for your final push?
☕ Host a Meetup: Organise a tea party or cake sale—it’s a fun, simple way to raise funds while connecting with others!
🚴 Get Active: Walk, run, cycle, or plan a sponsored activity. Every step you take brings us closer to our goal!
🎯 Top Tips for Success:
• Update Your Supporters: Share your progress and thank those who have already donated.
• Spread the Word: Ask friends and family to share your fundraising page—it’s never too late to find new supporters.
• Add a Fun Twist: A raffle or bake sale could help boost your total!
📩 Ready to take your event to the next level? Contact us at [email protected] for any final support or advice.
Together, let’s keep building momentum and make a big impact! 💪
#CountdownToConference #BBSUKConference #FundraiserChallenge ... See MoreSee Less
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Jjessica Wwalmsley
It's #RareDiseaseDay2025 on Feb 28th, and we're showing our support for everyone living with a rare condition. That's a whopping 300 million people worldwide!
#bardetbiedlsyndrome is a rare genetic condition that effects approximately 0.001% of babies born in the UK.
Here at BBS UK, we will exhibiting be in the main entrance of the Queen Elizabeth Hospital in Birmingham showing our support for the rare disease community and educating people about BBS.
If you'd like to come along, the event is free to attend with no registration required.
#RareDiseaseDay2025 ... See MoreSee Less
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I can’t wait to volunteer
📢 Free Mentoring for VI University Students! 🎓
Starting university can be exciting but also overwhelming—especially if you're visually impaired. That’s whyLOOK - supporting families living with visual impairment , with support from Thomas Pocklington Trust are offering a free mentoring programme to help VI students navigate uni life with confidence!
👥 Who is it for?
🔹 VI students starting university this autumn or currently in their first year
🔹 Those looking for guidance from someone who’s been there before!
💡 How does it work?
You'll be paired with a VI mentor—a trained student or graduate—who can share their real-life experience and offer advice on everything from making friends to self-advocacy and accessing support.
💬 Past mentees say:
🌟 "I didn't know anyone VI at uni before—now I have support and great advice!"
🌟 "This helped me step out of my comfort zone and gain confidence!"
🔗 Know a student who might benefit? Please share this info!
Want to know more? Contact Megan at LOOK by emailing [email protected] or 07464 351 958, Whatsapp: +44 7464 351 958 ... See MoreSee Less
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Sight Village Wales is returning to Cardiff on Tuesday, 8th April 2025, at the All Nations Conference Centre. 🎉
This free event is a must-visit for blind and low-vision individuals, offering a hands-on experience with the latest technology, products, and support services. 🛠️🧑🤝🧑
📅 Date: 8th April 2025
⏰ Time: 9:30 AM – 3:30 PM
📍 Venue: All Nations Conference Centre, Cardiff, CF14 3NY
Expect a wide range of exhibitors, insightful seminars, and a welcoming space to connect and learn. Refreshments available to purchase throughout the day. ☕🍽️
🎟️ Tickets are free but must be booked in advance! Don’t miss out—secure your spot today!
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Sight Village Wales 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
📢 Book now for our Annual Family Conference Weekend!
Join us from Friday 25th - 27th April 2025 at the Hilton Northampton for a weekend of learning, connection, and shared experiences about all things BBS.
Main Conference: Saturday, April 26th
🧬 Expert talks on BBS research, clinical updates & future planning, including:
- Professor Phil Beales – BBS research update
- Dr Elizabeth Forsythe – Setmelanotide clinics update
- Dr Gabrielle Blumer – Cognitive & behavioural profiles in BBS
- Philip Warford – Future planning
🎉 Children’s trip to Drayton Manor
💙 The conference day (including lunch & refreshments) is FREE for those with BBS and their immediate family! Accommodation costs apply.
🔗 Book your place now: [bbsuk.org.uk/news-events/annual-conferences/#conference-2025](bbsuk.org.uk/news-events/annual-conferences/#conference-2025)
Team BBS UK can’t wait to see you there!** 🙌
#Conference2025 #BardetBiedlSyndrome ... See MoreSee Less
Annual Conferences - BBS UK
bbsuk.org.uk
Attendees can look forward to a weekend filled with opportunities for connecting, sharing experiences, and staying informed about the latest research and1 CommentComment on Facebook
Harry Lodge
We're excited to once again be joined at our conference by Professor Phil Beales!
Prof Phil Beales is a world renowned researcher into Bardet-Biedl syndrome (BBS), ciliopathies and rare diseases.
You can expect another fascinating update on gene therapy and what this means for the future of the field of study.
If you haven't already, make sure to book onto the conference by visiting our website: bbsuk.org.uk/news-events/annual-conferences/#conference-2025 ... See MoreSee Less
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It's Retinitis Pigmentosa awareness month!
People living with Bardet-Biedl syndrome (BBS) may have a retinal degeneration similar to retinitis pigmentosa (RP) called rod-cone dystrophy. You can learn more about how eyes are affected by BBS in our Medical Information Handbook on our website:
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Publications - BBS UK
bbsuk.org.uk
BBS UK has been awarded the PIF TICK - the UK's only quality mark for print and online health information. To become a 'trusted information creator', BBS UK0 CommentsComment on Facebook