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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.
Last week, our Birmingham Patient Liaison Officers, Amy and Laura, supported a group of service users – including BBS UK Trustee Rachael Zimbler – to attend #SightVillage.
Sight Village is a brilliant opportunity for people with visual impairment to try out accessible tech and services first-hand. From audio and braille equipment to magnifiers, computers, daily living aids, and support services – it’s all about helping people find what works for them.
For many of our service users living with #BardetBiedlSyndrome, events like this are a chance to explore new ways to live more independently and confidently.
We’re proud to be there to support them! ... See MoreSee Less
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'Seeing Us' a BBS Documentary.
At BBS UK, we’re proud to support anyone using creativity to shine a light on Bardet-Biedl syndrome.
That’s why we were thrilled when Milly, a university student whose brother has BBS, chose BBS as the focus of her documentary project and reached out to connect with our community.
While this documentary was independently produced by Milly as part of her university work, we were glad to help her connect with members of the BBS community.
We’re so thankful to Milly for choosing BBS as her subject, and for the care and sensitivity she brought to the project. A huge thank you as well to the three individuals who took part — your honesty and openness make this film powerful, real, and important.
⚠️ Please note: some parts of the documentary may be emotionally challenging. If you need support, we’re here — don’t hesitate to reach out.
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💬 Supporting Young People Through the Transition to Adult Services
At the recent BBS UK Conference, we had an excellent presentation on Managing Transitions by Anna Smith (Rareminds) and Marie McGee (Transition Coordinator). You can watch/listen to this on our YouTube channel. Moving from children’s to adult services is a big step, and for many young people, hospital visits can add extra stress.
Let’s be honest—no one enjoys going to hospital, especially when visits are frequent or long. Some young people develop a real fear or aversion to hospitals, making these experiences even harder. This practical resource from Great Ormond Street Hospital (GOSH) is designed to help teenagers cope with hospital stays:
👉 Helping Your Teenager Cope with Hospital: www.gosh.nhs.uk/patients-and-families/your-hospital-visit/coming-gosh-day-or-inpatient-admission/...
At BBS Clinics, our Patient Liaison Officers (PLOs) use their knowledge and understanding to help make clinic visits as calm and stress-free as possible. We’re flexible and adapt the clinic day to suit each young person’s needs.
If you or your family need support with managing transition or preparing for clinic visits, we’re always here to help. 💙 ... See MoreSee Less
Helping your teenager cope with hospital
www.gosh.nhs.uk
It is normal for anyone (at any age) to feel apprehensive about coming into hospital. Teenagers already face the everyday challenges of growing older, balancing increasing amounts of schoolwork and en...0 CommentsComment on Facebook
🌟 In the latest issue of Exceptional Times, Mum Dianne Garrett shares her heartfelt story of raising her young son with #BardetBiedlSyndrome. Many in our community will recognise the feelings — the love, the challenges, and the resilience that life with a rare condition brings.
You’ll also find reflections on life with autism, the realities of rare diseases, and meet a Cincinnati barber who’s making a difference for children with disabilities, one haircut at a time.
Although this is an American magazine — and the support services and protocols mentioned may be different to what’s available here — the emotions, struggles and small joys are universal. 💙
✨ Read the latest issue here: shorturl.at/gEFJl
Thank you Centre for Parent Information and Resources. ... See MoreSee Less
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Paid internship opportunities for blind and partially sighted job seekers with Thomas Pocklington Trust.
Looking to build your skills, return to work, or boost your career? Thomas Pocklington Trust’s Get Set Progress internships are open now – with roles like:
🔹 Marketing & Communications
🔹 Accessibility Software Testing
🔹 Business Development
🔹 Sight Loss Advice
🔹 Finance
...and more!
💼 Remote, hybrid, and in-person roles available across the UK. Plus, their friendly Employment team is ready to help you with your CV and applications.
Follow the link for more information and how to applyNeed a hand applying for our Get Set Progress internships? We’ve got you covered.
Our Employment team is on standby, ready to support you with your CV and guide you through the application process.
If you're blind or partially sighted and looking for meaningful work experience, the Get Set Progress internship scheme is still open, offering a variety of paid roles to help you take the next step in your career.
Here are just a few of the roles available:
- Communications and Marketing Coordinator
- Finance Intern
- Sight Loss Advisor
- Accessibility Software Testing Intern
- Volunteer Coordinator
- Marketing and Events Intern
- Business Development Coordinator
- Information Support Officer
- Internal Communications Intern…and many more!
Opportunities are remote, hybrid or in-person across the UK. For personalised support with your application, contact our Employment team at [email protected].
See the full list of vacancies and apply here: f.mtr.cool/hkzhvxplea
Don’t snooze, deadlines are approaching fast.
#GetSetProgress #EmploymentSupport #JobVacancies #BlindAndPartiallySighted
Image description: Vacancies announcement for the “Get Set Progress” internship programme. The text reads: "Vacancies! Vacancies!! Get Set Progress Internships are now live. If you’re blind or partially sighted, apply today! Apply Today →". At the top left is the Thomas Pocklington Trust logo. At the bottom is the “Get Set Progress” internship programme logo. The image features a confident woman smiling and standing with arms crossed in an office setting, with colleagues in the background. ... See MoreSee Less
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Many of you will know Professor Phil Beales—not only as a world-leading researcher in #BardetBiedlSyndrome but also as a much-loved part of the BBS UK family. As our Medical Advisor and President, Phil has shared his expertise and kindness with our community for years, speaking at our conferences and keeping us all up to date on the latest developments in gene therapy.
Recently, Phil joined the Foundation Fighting Blindness podcast to talk about BBS and the exciting progress being made in gene therapy for BBS1.
🎧 Have a listen and hear Phil’s passion for the work and for our community. You can find the episode here or on Soundcloud: ... See MoreSee Less
Eye on the Cure Podcast | Episode 87: Dr. Philip Beales
bit.ly
Dr. Philip Beales, a co-founder of Axovia Therapeutics, talks about Bardet Biedl syndrome.1 CommentsComment on Facebook
🎧 To celebrate 50 years of British Blind Sport, The Golden Legacy Series brings you inspiring conversations with leaders in sport.
🎙️ Episode 3 – Sally Munday OBE, Chief Exec of UK Sport
Sally shares her journey and how UK Sport backs Paralympic and Olympic athletes, with a focus on inclusion.
🎙️ Episode 4 – Tim Reddish CBE, Paralympian & Advocate
Tim reflects on his path from swimmer to sport leader — and how sport empowers and connects people.
📱 Listen for free now on Apple Podcasts and Spotify — search "Let’s Talk VI Sport" to find the series. ... See MoreSee Less
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Truly inspiring story of how Brandon, a former student at The Royal National College for the Blind (RNC), started his own braille business with the help of The King's Trust.
He had a goal to make the world more inclusive and now his printing business creates braille menus, greetings cards, colouring books, artwork and more!
Well done Brandon! ... See MoreSee Less
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Join us at the Retina UK Professionals’ Conference 2025 — live in London or online!
We’re excited to be exhibiting at this year’s Retina UK Professionals’ Conference on Friday 19 September — a free, CPD-accredited event for anyone working in or alongside the vision impairment community.
Whether you're an ECLO, rehab specialist, optometrist, or a professional supporting people with inherited sight loss, this is your chance to connect, share knowledge, and hear directly from those with lived experience.
🧠 What to expect:
Key insights from Retina UK’s 50-year journey
Findings from the latest Sight Loss Survey
A powerful lived experience panel
Sessions tailored for ECLOs, rehab/hab specialists, and eye care professionals
Expert-led discussions on low vision strategies, inclusive support, and mental wellbeing
📍 In person in London for a deeper dive and tailored sessions
💻 Online if you prefer to join from anywhere
Secure your place: ... See MoreSee Less
Retina UK Professionals’ Conference 2025
retinauk.org.uk
The Retina UK Professionals’ Conference is aimed at anyone who works with our community in a professional capacity.0 CommentsComment on Facebook