Annual Conference
Our annual family conference weekend brings members of the BBS community together with researchers, professionals and experts for a weekend of learning about Bardet-Biedl syndrome.
Attendees can look forward to a weekend filled with opportunities for connecting, sharing experiences, and staying informed about the latest research and clinical management—all set within the welcoming atmosphere of the Hilton Hotel, where we have hosted our conferences for over 30 years.
Conference 2025
25th-27th April 2025
Hilton Hotel, Northampton
We will be returning to the Hilton Hotel, Northampton, across the weekend of 25th-27th April 2025, to once again welcome delegates from far and wide for a weekend of learning and sharing experiences about all things BBS. The main event is our formal conference programme on Saturday 26th April and we are working hard to put together an exciting and informative programme with something for everyone!
Programme
The final programme is still in development and will be available in the next few weeks and months - you can expect updates on BBS research, clinical management, personal perspectives and much more; speakers confirmed to date are:
- Research update: Professor Phil Beales, ICH & Axovia Therapeutics
- Setmelanotide clinics update: Dr Elizabeth Forsythe, Gt Ormond St Children's Hospital
- Cognitive and Behavioural Profiles in BBS: Dr Gabrielle Blumer
- Future planning: Philip Warford, Renaissance Legal
In the afternoon we will split into two groups, with a separate programme for adults living with BBS, and for parents of children and young people living with BBS, to allow for more focused sessions.
Children and young people
For the children and young people, we are planning a fun day out, with an on-site creche also available.
More information coming soon.
Feedback received:
‘It is always great to hear about the scientific developments. The personal perspectives are always emotional because they remind you of where you were but they also remind you of how far you have come.’
‘Without exception all the presentations were first-class.’
'I hear nothing but good from delegates and a professional told me it was the best organised conference they had been to...'
‘I thought the whole weekend was very good for everything, the speakers were very interesting and so were the workshops, and the evenings were good meeting old friends and making new ones, so it was excellent and I enjoyed myself, so thank you.’
Cost
The conference day and children's trip (including lunch and refreshments) is free of charge for those with Bardet-Biedl syndrome, and their immediate family (parents, grandparents, siblings) up to a maximum of four adults. Children (those with BBS and their siblings) go free. Donations are of course extremely welcome and can be made via the link opposite.
Additional family/friend attendees: £30
Additional child attendees: £20
Professional Delegates: £40
How to book
Booking will once again be in two parts:
- Book your place with BBS UK - this is essential, we usually book out and delegates must ensure they have confirmation of a place from us before booking their accommodation - a booking form will be shared in the next week or two.
- Book your accommodation - we have a block of rooms held at the Hilton Hotel on a dinner, bed and breakfast basis. Rates and our special booking code coming soon!
Livestream
We will also live stream the conference via Zoom, and record the sessions for those unable to attend in person. More information and how to register will be available nearer the time.
We need your support!
Countdown to Conference Fundraiser
During the countdown to our annual conference in April 2025, we are challenging YOU with a competition to see who can raise the most money for BBS UK.
Every fundraiser who pledges to raise at least £100 will receive a BBS UK T-Shirt and fundraising pack, and the three top fundraisers will receive a limited-edition BBS UK hoody!
Got what it takes to be a top fundraiser? Join our Countdown to Conference competition! Find out more here.
We need your support:
Conference Schedule
Directions to Conference
Address:
Hilton Northampton, 100 Watering Lane, Collingtree, Northampton, NN4 0XW
Full details on how to get to the hotel can be found on the Hilton Northampton's website here.
By car
There is ample onsite parking available.
By plane
- Birmingham airport - 50 miles
- Luton airport - 35 miles
- Northampton/Wittering RAF Station - 2 miles
By train
The hotel is a 15 minute taxi journey from Northampton train station.
Past Conference Recordings
Can't wait for April? Recordings from our past conferences are available to watch and listen to on our YouTube channel.
You can also watch and listen to our recordings from our 2024 online conference by clicking the videos below.
YouTube
Welcome - Laura Dowswell - BBS UK Conference 2024
Introduction to BBS - Dr Shehla Mohammed - BBS UK Conference 2024
Update on Research and Study of BBS - Prof Phil Beales - BBS UK Conference 2024
Respiratory Ciliopathy and BBS - Prof Claire Hogg - BBS UK Conference 2024
Q&A - Prof Phil Beales, Dr Shehla Mohammed and Prof Claire Hogg - BBS UK Conference 2024
A Sibling's Perspective - Greg Dowswell - BBS UK Conference 2024
Supporting Siblings - Clare Kassa - BBS UK Conference 2024
Sibling Q&A - Greg Dowswell and Clare Kassa - BBS UK Conference 2024
Artificial Intelligence for Accessibility - Hector Minto - BBS UK Conference 2024