News & Events

Bardet-Biedl Syndrome UK

3 days ago

BBS UK Members – We Need Your Support!

Our Annual General Meeting (AGM) is coming up, and we’re inviting BBS UK members to join us online.

📅 Saturday 21st November 2026
🕙 10:00am – 11:00am
💻 Via Zoom

This is an important meeting for our charity and we need enough members present for the AGM to go ahead. By attending, you’ll help ensure the continued work and progress of BBS UK 💙

The AGM is also a chance for members to come together, hear updates, celebrate achievements, and have your say by voting for the Board of Trustees.

👉 Register to attend via Zoom here: us02web.zoom.us/meeting/register/Bz83hELxRkGXmaave4qV1A

📝 All AGM documents (agenda, proxy form, minutes, reports, and trustee details) and the link to register are available on our website: bbsuk.org.uk/annual-general-meeting-2026/

📩 Contact [email protected] if you have any questions

Let’s make sure our voices are heard and our community stays strong. 💙 ... See MoreSee Less

Invitation to the BBS UK Annual General Meeting - BBS UK

bbsuk.org.uk

Members of BBS UK are invited to register for the 2026 Annual General Meeting.

Bardet-Biedl Syndrome UK

4 days ago

💙 Supporting our BBS community in making their voices heard!

We'd like to recognise BBS UK service user Marilyn Lant, who has been featured in a recent BBC News article about her campaign against floating bus stops.

Marilyn, who is blind and has BBS, recently travelled to 10 Downing Street with her guide dog alongside other disability campaigners to call for changes to floating bus stops across the UK.

Floating bus stops require passengers to cross a cycle lane to board or leave a bus. For people who are blind or visually impaired, this can create significant safety concerns, making it difficult to travel confidently and independently.

Marilyn has been campaigning to highlight these barriers and the impact they have on people with sight loss.

At BBS UK, we believe that everyone should be able to access public transport safely and independently. We fully support Marilyn in raising awareness of this important accessibility issue and ensuring that the voices of people with disabilities are heard.

👏 A huge well done to Marilyn for her determination and commitment to making a difference, not just for herself, but for others facing similar challenges!

📰 Read Marilyn's story in the BBC News article below:

... See MoreSee Less

Blind woman from Exeter urges PM to remove floating bus stops

www.bbc.co.uk

Marilyn Lant says floating bus stops are dangerous as she does not know when cyclists are coming.

Bardet-Biedl Syndrome UK

6 days ago

🚴‍♂️🏆 A huge congratulations to Christian Bolton-Edenborough!

We're delighted to share that Christian, a BBS UK service user, has achieved 1st place in his group in the 2026 Lloyds National Disability and Para-cycling Road Series! 👏

Christian competes on a tandem bicycle alongside his guide cyclist, combining his passion for racing with the freedom and excitement that tandem cycling offers.

Speaking to British Cycling about his love of the sport, Christian shared how his passion began with his father, who raced in the 1950s Tour of Britain.

He also spoke about what tandem cycling means to him as someone living with a visual impairment:

"Tandem racing is incredibly accessible to a visually impaired rider. It gives you back the feeling of some independence and the thrill of racing without the fear of your disability causing you injury. It takes you to new places and can show you what you can achieve."

What a fantastic achievement and an inspiring reminder of the opportunities that accessible sport can offer! 💙

Congratulations, Christian, and thank you for sharing your wonderful news with the BBS community!

You can read Christian's story in the British Cycling article below 👇

www.britishcycling.org.uk/disability/article/20260927-Meet-the-2026-Lloyds-National-Disability-an... ... See MoreSee Less

Meet the 2026 Lloyds National Disability and Para-cycling Road Series Winners

www.britishcycling.org.uk

Across four rounds of close competition, 11 riders were crowned series champions in the 2026 Lloyds National Disability and Para-cycling Road Series. From Bradford and Darley Moor to Kent and Devon, t...