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.
Conference Schedule
Our next in-person conference is expected to be held across a weekend in Autumn 2026, and we look forward to once again welcoming delegates from far and wide, for a weekend of learning and sharing experiences about all things BBS.
How to book
Bookings for the 2026 conference will open in Autumn 2025. We will keep everyone updated via social media and email - to stay in the loop, you can join our mailing list here.
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.
Additional family/friend attendees: £30
Additional child attendees: £20
Professional Delegates: £50
Watch from Home
Our conferences are livestreamed and recorded using Zoom, so if you are unable to attend in person, you can still join us from the comfort of your home... and why not invite your family or friends to join you and us on the day!
After the event, a recording of the conference will be available on our YouTube channel and website.
Programme
Each year, our conference features a rich programme of inspiring speakers, the latest in BBS research, clinical updates, personal stories, and more.
To get a feel for what we offer, you can explore the 2025 programme here:
Weekend programme of events: WORD and PDF
Speakers:
We pride ourselves on bringing the BBS community a varied programme, with expert voices and fresh perspectives. You can read about our 2025 speakers HERE.
Highlights include:
- Professor Phil Beales (ICH & Axovia Therapeutics) with the latest research updates
- Dr Elizabeth Forsythe (Great Ormond Street Hospital) sharing insights from Setmelanotide clinics
- Personal stories of adults living with BBS
Contact Information
If you have any questions about our conferences please email [email protected] and we will come back to you as soon as we can.
Feedback received:
"The conference allows me to meet with other people with BBS and relate to their challenges. Also I am able to learn about any new research and treatments that might be available in the future."
‘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.’
"For my first time, I’ve left feeling very comforted and inspired. On the trains home I hit the ground running reaching out for various support and also fundraising ideas. Thank you!"
"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."
"We have made such great friends at Conference and this has really been a huge support.
The research and educational presentations are also extremely important to equip us with the latest information. Knowledge is power and the more we can learn about BBS the better equipped we are.
It is also such a well organised and well run event that we look forward to attending as we know that we don't have to worry about anything - all members of the family are catered for.
This is such an amazing and priceless event. Long may it continue!"
Pay or donate:
Past Conference Recordings
Can't wait for the next conference? 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 2025 online conference by clicking the videos below or following the link to the playlist on YouTube here.
YouTube
Update on Gene Therapy - Professor Phil Beales- BBS UK Conference 2025
Therapeutic Approaches for Retinal Dystrophies- Robert Henderson - BBS UK Conference 2025
Setmelanotide clinic, BBS Registry and Sleep study - Dr Elizabeth Forsythe - BBS UK Conf 2025
Q&A Session with Prof Phil Beales, Dr Elizabeth Forsythe & Robert Henderson - BBS UK Conf 2025
Personal Perspective of living with Bardet-Biedl syndrome - Stefan Crocker - BBS UK Conference 2025
Staying Safe Online - Sophie Corness - BBS UK Conference 2025
Update from BBS UK - Tonia Hymers - BBS UK Conference 2025