Annual Conferences

Our annual family conference weekend brings members of the community together with interested professionals and experts to provide updates on the latest research and the opportunity to participate in tailored workshops.

Importantly, there it’s a safe space to connect and share advice and support with each other, the team at BBS UK, and invited relevant, external organisations.


Online Conference 2024

Join us online for our annual conference!

Saturday 8th June 2024, 10:00am – 3:00pm

We have an exciting programme to share with you which will include updates on the research and management of Bardet-Biedl syndrome (BBS), invaluable personal perspectives from our members and an update on the work of BBS UK.


Please down the full 'Delegate Information Pack' for detailed timings and speaker profiles. Available in PDF, Word and Plain Text format.

  • Welcome - Laura Dowswell, BBS UK Chair
  • Introduction to BBS - Dr Shehla Mohammed, Guys and St. Thomas’ NHS Trust
  • Update on Research and Study of BBS - Professor Phil Beales, Great Ormond Street Institute of Child Health, Guys and St. Thomas’ NHS Trust
  • Respiratory Ciliopathy and BBS - Professor Claire Hogg, Royal Brompton
  • A Sibling’s Perspective - Greg Dowswell
  • Supporting Siblings - Clare Kassa, CEO, SIBS (Pre-recorded)
  • Artificial Intelligence for Accessibility - Hector Minto, Microsoft
  • Irritable Bowel Syndrome (IBS) and BBS - Kelly Slater, Dietitian, QEH BBS Clinic
  • Personal Perspective - Bilaal Ali
  • Update on Setmelanotide - Dr Elizabeth Forsythe, Great Ormond Street Institute of Child Health
  • BBS Gene Therapy & Clinical Trials - Dr Arlene Drack, University of Iowa

If you have any questions about the conference or would like to submit a question to one of the speakers in advance, please email [email protected]

How to join the conference:

We will use Zoom, the same platform we used to livestream our conference in September 2023.

Click here to register to join our online conference.

Upon registration, you will be sent a link that will give you access to the event. On the day of the event, you will simply need to click on the link from your chosen device and enjoy the presentations from the comfort of your home.


Is there a cost?

No! The online conference is free to watch and listen to.

I’m not available on 8th June. Can I watch and listen to the conference another way?

Yes! A recording of the conference will be available on our YouTube channel and website.

Why is the conference online and will there be an in-person conference in 2025?

We reviewed the feedback from Conference 2023 and although overwhelmingly positive, it is clear that you want us to look for an alternative venue, one that is easier to get to with accessible rooms. We hear you and we agree! We also wish to bring the event back to Spring. This means that whilst our BBS UK team is working hard to improve our conference experience for 2025, Conference 2024 will be an online event. We will put on an in-person conference in 2025. There is no information about this yet, but Team BBS UK are working hard on it!

How do I use Zoom?

You can either download the Zoom app on your device, or you can access the conference through your web browser (Google Chrome, Safari, Internet Explorer etc.)

If you’re new to using Zoom, we recommend the Joining a Zoom meeting video on YouTube or the ‘Joining and participating in Zoom Webinars‘ written guide from Zoom.

Please test your internet connection and speakers before the conference. Our staff will be running the conference and might not be able to help on the day.


Donations are very welcome:

Conference 2023

Team BBS UK were delighted to return to the Hilton Hotel, Northampton, to once again welcome delegates from far and wide for a weekend of learning and sharing experiences about all things BBS.

The Hilton Hotel, Northampton, centrally located for rail, road and air travel, has been home to our Conferences for over 25 years. Many of the staff have been with us from the beginning and they pride themselves on their service and exceptional attention to detail throughout the weekend, and what a fabulous weekend it was.

Initial feedback has been excellent and we have received lots of ideas for future events also - thank you to all of you who have completed an evaluation form; we will publish a report of your feedback here, in the coming weeks.

Edited versions of the presentations will be included in the next newsletter, due out in December, and the full recordings can be viewed below.


Donations are very welcome:

BBS UK Conference 2023 Recordings


Conference Schedule


  • Friday: Guests arrived on the Friday afternoon/evening and enjoyed the opportunity to relax in an inclusive and welcoming environment.  During the evening we held a children/young people’s group meeting, a meeting for first time attendees and a social event for adults who have BBS. 
  • Saturday: The main conference programme took place on the Saturday with an excellent mix of presentations and workshops including with Professor Beales, who gave an overview of research and development in the world of BBS. For our younger members, there was a fun-filled day trip to enjoy (accompanied by a parent/family member) and, for the little ones, a pop-up crèche.  
  • Sunday: The programme continued on the Sunday morning with updates from BBS UK, a personal perspective and the AGM; the children and young people enjoyed a range of activities to keep them busy, including a taster session with British Blind Sports.  Tea and pastries were served late morning before we all said our farewells.