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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.
📢 And last but certainly not least, our final conference speaker: Tonia Hymers!
As Operations Manager of BBS UK, Tonia is the driving force behind the charity, leading projects, events, and services that support the BBS community.
At the BBS UK Conference, she’ll give an essential update on everything the charity has achieved over the past year—including clinics, advice services, events, fundraising and much more.
🚨 Conference bookings are now closed. Please email us at [email protected] to join the waiting list.
🔗 bbsuk.org.uk/news-events/annual-conferences/#conference-20
📺 Livestream registration now open! ... See MoreSee Less
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For #NationalSiblingsDay2025, we’re looking back at a special moment from last year’s online conference.
Greg Dowswell shared his personal experiences growing up as the younger brother of Maria, who was diagnosed with #BardetBiedlSyndrome at age 13.
Greg gave an insight into their sibling relationship and how Maria’s diagnosis
affected their family.
You can check out his talk on our YouTube channel, alongside all of the other talks from conferences in recent years.
youtu.be/NkY5w90NN4w?si=upUHdbbLP1CdPm-v
Don't forget, you can register for our online conference on Saturday 26th April through our website! ... See MoreSee Less
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It's #NationalSiblingsDay2025!
And here at BBS UK, we want to give a shout out to all of the amazing siblings of people living with #bardetbiedlsyndrome. Thank you for being your sibling's no.1 supporter!
Sibs - for brothers and sisters have a ton of fun and informative activity packs and resources for all ages as well as for parents, schools and workplaces on their website so make sure to check that out.
And spread the word about National Siblings Day by using the hashtag #itsasiblingthing and share your experience of being a sibling, such as your favourite memory with your siblings or something that you both love!
Thank you again siblings! We see and appreciate you 💙 ... See MoreSee Less
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📢 Introducing our next conference speakers: Dr. Emilia Kieckhöfer, Julia Günzler, Jannis von Spreckelsen & Dr Viola Kretschmer!
This team of researchers from Germany will deliver an accessible science presentation designed for people living with #BardetBiedlSyndrome.
🚨 Conference bookings are now closed. Please email us at [email protected] to join the waiting list.
🔗 bbsuk.org.uk/news-events/annual-conferences/#conference-20
📺 Livestream registration now open! ... See MoreSee Less
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“With open arms and hearts, we were adopted by you all.” 💙
That’s how one of our attendees described the BBS UK Annual Conference.
This special weekend brings together individuals and families living with Bardet-Biedl syndrome, alongside researchers and professionals, for learning, connection and support.
It’s more than a conference. It’s a reminder—not just of the challenges of living with BBS, but of the progress, resilience and achievements of our community.
And it only happens because of your support.
Every donation—big, small and everything in between—helps us keep this event going.
👉 bbsuk.org.uk/donate-to-bbs-uk/#donation-options
Thank you to everyone who’s donated already. We couldn’t do this without you! ... See MoreSee Less
Support us - BBS UK
bbsuk.org.uk
During the countdown to our annual conference in April 2025, we're challenging our fundraisers to a competition to raise the most money for BBS UK.0 CommentsComment on Facebook
We're hiring!
BBS UK are seeking an experienced and dedicated Advice Worker to join our passionate and committed team. This role offers a unique opportunity to provide tailored guidance on social care, disability benefits, health services, and education support, making a meaningful difference to those we serve.
Full details and how to apply can be found on CharityJob through the link below:
... See MoreSee Less
www.charityjob.co.uk
www.charityjob.co.uk
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Bookings for the in-person conference are now closed!
If you would like to join the waiting list, please email [email protected] with the names and number of guests. We will do our best to accommodate if we have any last minute cancellations.
The conference will be livestreamed and you can register on Zoom now by following the link to our website: bbsuk.org.uk/news-events/annual-conferences/#conference-2025
Only 3 weeks to go until #bbsconf2025! ... See MoreSee Less
Annual Conferences - BBS UK
bbsuk.org.uk
Attendees can look forward to a weekend filled with opportunities for connecting, sharing experiences, and staying informed about the latest research and0 CommentsComment on Facebook
📢 Introducing our next conference speaker: Dr. Gabrielle Blumer!
Dr. Blumer is a Clinical Psychologist at St George’s Hospital, specialising in neurological and neurodevelopmental conditions. Her research explores how cognitive, behavioural, and emotional factors impact the quality of life for children and young people with #BardetBiedlSyndrome.
At the BBS UK Conference, she’ll share insights into these challenges and how they relate to daily life.
🚨 Limited places available, so book your place now!
🔗 bbsuk.org.uk/news-events/annual-conferences/#conference-20
📺 Livestream registration now open! ... See MoreSee Less
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📢 Introducing our next conference speaker: Suzy McDonald!
Suzy is a Senior Habilitation Specialist dedicated to helping children and young people with vision impairments develop their mobility and independence skills.
At the BBS UK Conference, she will provide insight into what parents should expect from a habilitation service and explore the unique mobility challenges faced by children with BBS as they grow.
🚨 Limited places available, so book your place now!
🔗 bbsuk.org.uk/news-events/annual-conferences/#conference-20
📺 Livestream registration now open! ... See MoreSee Less
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