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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.
📢 Introducing our next conference speakers: Sarah Flack & Dr. Emma McGibbon!
Sarah Flack, Principal Dietitian at Great Ormond Street Hospital, has been part of the BBS multi-disciplinary team since 2010. She specialises in the dietary challenges of BBS, offering invaluable support to individuals and families.
Dr. Emma McGibbon, Clinical Psychologist at Great Ormond Street Hospital and Guy’s and St Thomas’, works across BBS services, supporting individuals throughout their lives. She specializes in neurodevelopmental differences and emotional well-being.
At the BBS UK Conference, Sarah and Emma will be exploring hunger, food behaviour, and practical strategies for managing dietary challenges.
📅 We're almost at capacity so book your place now at bbsuk.org.uk/news-events/annual-conferences/#conference-20
📺 Livestream registrations coming soon!
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Photos from Knitted By Nannies's post ... See MoreSee Less
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Knitting Nannies have taken a break from knitting Paddingtons and produced these gorgeous friendship boxes … £10 plus £3 postage with every penny going to Bardet-Biedl Syndrome UK Each box contains two small knitted dolls appx 6” high … See how to pay in the comments 🙂 ... See MoreSee Less
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📢 Introducing our next conference speakers: Marie McGee & Anna Smith!
Marie McGee, Transition Care Coordinator at Birmingham Women’s and Children’s Hospital NHS Foundation Trust, supports young people with rare genetic conditions as they move into adult care, ensuring a smooth and informed transition.
Anna Smith, a UKCP-registered Integrative Psychotherapist with @raremindsuk specialises in supporting children and families, focusing on how family dynamics impact well-being, especially in the context of neurodiversity and special educational needs.
At the BBS UK Conference, Marie and Anna will be offering practical advice on navigating adult services and managing key life transitions.
📅 Book your place now at bbsuk.org.uk/news-events/annual-conferences/#conference-20
📺 Livestream registrations coming soon!
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📢 Introducing our next conference speaker: Sophie Corness!
As Marketing & Student Recruitment Manager at the The Royal National College for the Blind (RNC) Sophie helps young people stay safe online while managing their digital presence.
At the BBS UK Conference, Sophie will share essential online safety tips, offering practical advice on protecting your personal information and navigating the digital world securely.
📅 Book your place now at bbsuk.org.uk/news-events/annual-conferences/#conference-20
📺 Livestream registrations coming soon!
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Cuts to disability benefits would be devastating for the #BardeBiedlSyndrome community. Many of our service users rely on this support to manage daily life, access essential care, and live with dignity. Further cuts are not an option.
📢 Stand with us and Scope—sign the petition to protect disability benefits:
campaigns.scope.org.uk/page/165719/petition/1?locale=en-GB&en_chan=wa&ea.tracking.id=whatsapp-sha...Cutting disability benefits would have a catastrophic impact, pushing more people into poverty.
🖊️ We’re one of 16 charities that have written to the Chancellor today, urging her to think again before imposing cuts.
Life costs more for disabled people.
Huge numbers already live in poverty as a result of these extra costs. The impact of any further cuts to disability benefits would be devastating.
We know the benefits system is broken and needs reform.
But disabled people need to be heard and supported by the government.
Changes to welfare must start by listening to disabled people. Not with cuts.
📷 Image description: Text reads, "Dear Chancellor, We fear the cost of cuts is too great." Open letter. ... See MoreSee Less
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📢 For our next conference speaker, we have: Denise Rawden!
Denise is Head of Information & Support at Retina UK and is passionate about helping people with inherited retinal conditions by providing emotional support and clear, reliable information.
At the BBS UK Conference, Denise will share how peer support can empower and connect people, creating a safe space to exchange tips, stories, and advice. She’ll also introduce the services Retina UK offers and how to access them.
📅 Book your place now at bbsuk.org.uk/news-events/annual-conferences/#conference-20
📺 Livestream registrations coming soon!
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