Online Conference 8th June 2024

Posted on 16 April 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.


  • Professor Phil Beales: Update on Research and Study of BBS
  • Dr Elizabeth Forsythe: Update on Setmelanotide
  • Philip Warford, Renaissance Legal: Future Planning
  • Dr Kym Winter, RareMinds: Mental Health Support for the Rare Disease Community
  • Dr Arlene Drack, University of Iowa: Gene therapy research for eyes
  • Clare Kassa, SIBS, a charity supporting siblings: Title to be confirmed

More speakers to be announced soon…

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.

You can register to join our online conference here.

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 our 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.

BBS UK Virtual Conference 8th June 2024. People are sat facing away from the camera in a conference room.