News & Events
BBS UK on Facebook
On behalf of Team BBS UK and our Board of Trustees, we'd like to wish everyone a happy holiday season!
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Merry Chirmas or in Manx Nollick Ghennal to uk bbs form Duncan in isle of man . the team in uk was so good me and my mun my frist time go to bimmerham big city to me as form samll island and 2024 first i told had bbs erly in yaer and give buch good infor for us take back to my gov in isle of man as am only bbs we kown of in isle of man so mery chistmas to bbs team be help me and my mum
Did you know that RNIB have their own 24/7 radio station Connect Radio? Listen to a mix of information, music shows, entertainment and interviews hosted by blind and partially sighted presenters.
Topics include technology, Talking Books, sports, accessible arts, vintage music, and emerging artists
Tune in through various platforms including Freeview Channel 730, online streaming, smart speakers, or 101FM in the Glasgow region.
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Such an amazing team running a brilliant listening experience!
BBS UK Trustee Bilaal Ali was the 100th intern to join the Get Set Progress internship programme, an initiative developed by Thomas Pocklington Trust in collaboration with the RNIB to support blind and partially sighted people to access work opportunities with inclusive employers.
You can read more about Bilaal and the internship programme by following the link below:
www.pocklington.org.uk
A series of videos demonstrating the accessible technology blind and partially sighted people use to perform tasks in the workplace as well as their fully sighted colleagues.1 CommentComment on Facebook
Its a pleasure to be part of such a lovely community thank you !
🎄❤️ Thank you for becoming a Friend of BBS UK! ❤️🎄
A HUGE thank you to everyone who signed up to become a Friend of BBS UK and donate monthly to our charity! Your support means the world to us and the families we help. 🌟
If you’ve already signed up, keep an eye on your post—your hand-knitted Christmas gift is on its way, if it hasn’t arrived already! 🎁🎅🧶
While the Christmas gift offer has finished, it’s never too late to make a difference. You can still become a Friend of BBS UK and support the vital work we do all year round for people with #BardetBiedlSyndrome and their families. 🌟❤️
Sign up today and help us continue making a lasting difference! 💫
bbsuk.org.uk/friends-of-bbs-uk/
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Retina UK hold regular online or in-person support groups for people with #SightLoss.
They are a welcoming, safe and friendly place for people to share experiences, tips and information and form friendships.
Some of the focused groups include:
- Men’s Peer Support Group
- Scotland Peer Support Group
- ‘Talking’ Tech
- ‘Talking’ Travel
- Young Adults Peer Support Group
To find out what's available to you locally and to get involved, follow the link to the Retina UK website:
retinauk.org.uk/information-and-support/services/local-peer-support-groups/
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It’s not too late for a beautiful hand knitted elf in time for Christmas!
Knitted by Nannies have just a few left at £10 each with all proceeds going to us at BBS UK to help us carry on our services for people with BBS and their families.
Thank you to everyone who has already purchased one 🎄
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Last month we held our 2024 Annual General Meeting (AGM) where members gathered online to vote on key decisions. Thank you to the members who took time out of their weekend to join us.
The minutes from the AGM, along with the 2024 Annual Report and Accounts are available to read on our website:
bbsuk.org.uk/bbs-uk-publications/#agm-and-annual-reports
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🎄⏳ Last chance to become a Friend of BBS UK before Christmas and get your Christmas Gift! 🎁❤️✨
The clock is ticking! There’s just one week left to sign up as a Friend of BBS UK and receive your hand-knitted Christmas gift as a thank you! 🎅🧶🎄
Your regular donation of £5 a month can make a big difference in supporting people with #BardetBiedlSyndrome and their families. Join us in spreading some Christmas cheer and making a lasting impact! 🌟
Don’t wait—sign up now before the campaign ends! 🎄
*Sign-up by 9th December to receive your gift before Christmas*
bbsuk.org.uk/friends-of-bbs-uk/
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Our next monthly chat for adults with BBS will be held on Zoom on Wednesday 18th December, 7:00pm - 8:00pm, and will include a Christmas quiz!
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 to see you all there!
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Latest News
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.