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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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BBS UK Conference 2024 Report is Here!
We’re thrilled to share the BBS UK Conference 2024 Report with you!
This report captures the most important insights, updates, and takeaways from our incredible speakers. Whether you attended the event or couldn’t make it, this is your chance to stay informed and inspired.
Because of the size of the report, we've chosen to produce it digitally only in PDF and Word format.
You can read and download your copy today from our website: bbsuk.org.uk/bbs-uk-publications/#conference-reports
And don't forget, the videos from conference are available on our YouTube channel.
We'd love to hear your thoughts about the conference report! Let us know what you think about the report either in the comments or by emailing [email protected].
Let’s continue building awareness, knowledge, and support for the BBS community together.
#BardetBiedlSyndrome
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Any update when we can book conference please
Introducing our new Chair, Emma Hughes!
Emma has worked at Thomas Pocklington Trust, a national sight loss charity, since 2008 and has been at the forefront of the development and delivery of their services. She is passionate about ensuring that blind and partially sighted people are at the centre of all their activities.
Emma is excited to work “alongside the trustees, staff team and volunteers, and to continue their inspiring work to support people with BBS, their families and carers."
Thank you for volunteering your time and we look forward to working with you!
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Hi x
Welcome Emma
Welcome xx
Following our Annual General Meeting on 9th November, we'd like to welcome our two new trustees to BBS UK!
First up is Bilaal Ali!
Bilaal is a young man with BBS who is registered blind. He’s currently in the placement year of an Accounting and Finance degree at Sheffield Business School, is an avid sports enthusiast and plays blind football and tennis.
“Having lived with BBS since birth, I have valuable experience in key areas like education, employment, sports, and social connections. I’m passionate about supporting others with BBS.”
Thank you Bilaal for volunteering your time and we look forward to working with you.
Next week, meet our new Chair, Emma Hughes!
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I want to be a trustee
Renaissance Legal have a wealth of useful articles for families of children with disabilities. From universal credit, to inheritance, to wills and planning for the future.
We recommend checking out their website where you can find their blogs and resources.
This Wednesday, they are hosting a webinar 'Universal Credit for Disabled and Vulnerable People'. Follow the linked post for more information and how to book on.In a couple weeks, our Welfare Benefits Advisor, Nicola Spruce is presenting a free information webinar about Universal Credit. She will discuss what Universal Credit is and how the government’s ‘Move to UC’ strategy might affect you or somebody you are supporting.
Book a place here - ow.ly/8Hep50U0fx0
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🎄✨ There’s Still Time to Become a Friend of BBS UK! 🎁❤️✨
Have you signed up to become a Friend of BBS UK yet? By donating just £5 a month, you can help us provide vital support to people with #BardetBiedlSyndrome and their families. 🌟
And as a special thank you, if you sign up now, you’ll receive a beautiful hand-knitted Christmas gift! 🎅🧶🎄
Don’t miss out—help us make a lasting difference today! ✨
*Sign-up by 9th December to receive your gift before Christmas*
bbsuk.org.uk/friends-of-bbs-uk/
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LOOK - supporting families living with visual impairment is recruiting new University and Peer Mentors to join their pioneering mentoring programme! This is a fantastic opportunity to make a meaningful difference in the lives of visually impaired children and young people.
As a mentor, you’ll have the opportunity to share your own experiences, offer valuable guidance, and make a real difference in the lives of VI young people who are navigating similar challenges.
For more information, follow the link to the LOOK website:
www.look-uk.org
Join the LOOK Peer Mentoring team and begin your journey to make a real difference in the lives of visually impaired young people.0 CommentsComment on Facebook
It's #TrusteesWeek and BBS UK would like to thank each and every one of our trustees for volunteering their time and sharing their experience of BBS. Our charity could not run without our trustees!
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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.