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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.
📢 Ireland Information Day is back!
Following the success of our 2023 event, we're excited to once again come together with the BBS UK community in Ireland.
It will be a fantastic day full of insightful and informative speakers, as well as a fun and interactive day for the children and young people at the zoo.
Date: Saturday 11th October 2025
Location: Maldron Hotel, Dublin Airport
Start time: Registration 8:30am, speakers to start at 9:00am est.
Confirmed speakers:
• Professor Phil Beales
• Dr Elizabeth Forsythe
• Sarah Flack, Dietician
• BBS UK Support Team
🐅Children’s Day Out
Dublin Zoo with an exclusive private tour and lunch provided.
🛏Hotel reservations
There are a limited number of discounted rooms available at the Maldron Hotel Dublin Airport for those who wish to stay overnight. Bookings can be made directly with the Hotel Reservations Team on +353 1 8080 555 or by emailing [email protected] & quoting your conference reference “BBS”.
To book your free place, follow the link to our online form: forms.office.com/e/nVgx8pt3p2
Or email [email protected] and we will send the link directly to you by email ... See MoreSee Less
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What an inspiration! Just shows that it doesn't matter your age, if you want to learn a new skill you can! ... See MoreSee Less
“Because if I can do it at 73, so can everybody else.” If you’ve been wanting to learn braille, let this be your motivation to start 🙌 #Braille200 [Video description and transcript: Text at the top of the screen reads: “Why you can learn braille at any age.” Clip features a lady with flicky blonde curls wearing a red top sitting in a light airy room with strip lights on the ceiling. I started learning braille in July, and the reason I started learning it is because my eyesight is deteriorating and so I thought it'd be a good idea to try and learn it while I still had some vision. It means I feel more confident now, so I'm not so scared. I mean, yeah, because there's always an element if you think that your vision is going to totally go. But I feel that I must be able to cope with this. I mean, I use a long cane anyway, but I feel that life, I wouldn’t be quite so isolated now because I've met a lot more people as well. All in all, I'm really pleased I've done it and I would seriously recommend anybody else to give it a go, because if I can do it at 73, so can everybody else.]
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Focus Birmingham are holding another Wellbeing Day on Friday 29th August for people living with sight loss or supporting someone who is.
What to Expect:
- Live demonstrations to support your physical and emotional wellbeing
- A variety of stalls and speakers offering helpful information and resources
- Access to support services for people living with sight loss and complex needs
- A chance to connect with our community
- Free refreshments throughout the day
Follow the link to their website for more information and how to register: ... See MoreSee Less
Wellbeing Day 2025 - 29/08/2025 11:30:00
www.focusbirmingham.org.uk
Join us for a session dedicated to YOUR wellbeing with demonstrations, information and resources for all those living with sight loss0 CommentsComment on Facebook
Our next monthly chat for adults with BBS will be held on Zoom on Thursday 13th August, 7:00pm - 8:00pm.
We'd love for more of our community to come and join in the fun, so if you're not already on the mailing list, please email [email protected] and we can then send you the link to join.
Hope you can join us! ... See MoreSee Less
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There is now an accessible bowel screening kit for visually impaired people with instructions in braille, audio, large print or digitally.
To get your kit, call the NHS on 0800 7076060 . You will then be asked to choose your area hub by selecting an option between 1-6.
We're pleased to see that the NHS is working to improve accessibility 👏
For more information, check out Thomas Pocklington Trust's article by following the link below: ... See MoreSee Less
Accessible Bowel Cancer Screening Test - Thomas Pocklington Trust
www.pocklington.org.uk
Thousands of people with sight loss in England will find it easier to participate in life-saving bowel cancer screening thanks to a new specially designed NHS tool. People who are blind or partially s...0 CommentsComment on Facebook
☀️Navigating Summer Holidays: Support for Families
We know that summer holidays, while a time for fun, can sometimes bring extra challenges for parents and carers of children with visual impairments and other disabilities.
That's whyLOOK - supporting families living with visual impairment has developed helpful ideas and guidance to assist you in planning and preparing. Their resources are designed to help make the summer period more enjoyable for your family.
Discover valuable tips and resources on their website: ... See MoreSee Less
Summer Accessible Days Out – LOOK – Supporting Visually Impaired Young People to Thrive
www.look-uk.org
We’ve created a bumper list of Summer Holiday activities taking place all around the UK for blind and visually impaired children and young people.0 CommentsComment on Facebook
🎉 Free Microsoft Accessibility Workshop – Register Your Interest!
Are you an adult with a visual impairment who uses a Microsoft Windows PC or laptop?
We’re teaming up with Microsoft accessibility experts David Prince and Hector Minto (you may remember them from past BBS conferences!) for a free virtual workshop on how to make the most of built-in accessibility features like text-to-speech, magnification, and more.
🕗 The session will take place in the evening (date TBC).
💬 Interested? Email us at [email protected] by Monday 11th August to let us know. ... See MoreSee Less
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📣 Stay connected with BBS UK!
We’re here for you all year round — not just at conference time.
- Resources for living with BBS
Research & surveys that shape services
Upcoming events & workshops
Community updates from across the UK & Ireland
Ways to stay in the loop:
📱 Follow us on social:
🔗 Facebook | Instagram | LinkedIn | X
👥 Join our private Facebook groups for support & connection
💬 Monthly Zoom chats for adults with BBS
🌐 No social media? Visit: bbsuk.org.uk/news-events
📬 Get updates by email: bbsuk.org.uk/mailinglist
However you connect, we’re here for you. 💙 ... See MoreSee Less
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Carers UK's directory contains information and contact details for local carers' organisations across the UK, local council social services departments and local providers of the Carer UK’s ‘Digital Resource for Carers’.
Local carers' organisations will have detailed information on help and support available locally, such as:
- Where and how to access carers' assessments
- Local providers of respite care and sitting services
- What practical or financial support is available to help carers take a break
- Local carers' groups
- Carers' emergency card schemes.
Follow the link through the original post to find out what's available to you locallyLooking for support in your local area?
From support with paperwork to help with getting a break, many local carers’ centres offer a range of services.
Find out what’s available near you via our directory: www.carersuk.org/help-and-advice/support-where-you-live/ ... See MoreSee Less
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