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.


BBS UK Conference 2023

Join Us!

The BBS UK Annual Conference returns to the Hilton Hotel, Northampton, across the weekend of 22 to 24 September 2023.

For those who will experience this opportunity for the first time, we cannot wait to welcome you to the first of what we hope will be many conferences. The weekend is packed with new experiences from the moment you walk through the door, where your friendly BBS UK team will be there to welcome you.

The Hilton Hotel, Northampton, centrally located for rail, road and air travel, has been home to our Conferences for over 20 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. 

The conference programme, including Friday and Saturday evening meals, is free of charge to those who have BBS and their immediate family/carers, however if you plan to stay overnight, you will need to book and pay for your accommodation directly with the hotel. BBS UK are providing a limited number of ‘kids stay free’ places (for those who have BBS and their siblings, 17yrs and under) to stay at the hotel.

For all other delegates, the cost of attending the event is £40 per person including lunch. Friday and Saturday evening meals are an additional £20 per person, per meal.

Donations are of course very welcome:

Conference Schedule


  • Friday: Guests usually arrive on the Friday afternoon/evening and enjoy the opportunity to relax in an inclusive and welcoming environment.  During the evening there will be 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 takes place on the Saturday with an excellent mix of presentations and workshops including with Professor Beales, who will give an overview of research and development in the world of BBS. For our younger members, there will be a fun-filled day trip to look forward to (accompanied by a parent/family member) and, for the little ones, a pop-up crèche.  
  • Sunday: The programme will continue on the Sunday morning with updates from BBS UK, a personal perspective and the AGM; the children and young people will have a range of activities to keep them busy.  Tea and pastries will be served late morning before we all say our farewells.


How to Register

Send an email to [email protected]
Bookings have now closed due to high numbers, so please send an email to us with the information below if you would like to be added to the cancellation list:
  • Number of people wishing to attend the conference
  • Number of people wishing to attend the Child and Young Person's Trip (please let us know who is an adult and who is a child. All children must be accompanied by an adult)
  • Number of children who would need a place in the creche
  • How many hotel rooms you would need
If you have any queries, please contact Natalie Braunton:

Livestream Registration

The conference sessions on Saturday and Sunday will be available to watch live via the video conferencing app Zoom.

To register for each day, please follow the links below:

Speaker Profiles

The profiles of the speakers will be available soon.

Children and Young People's Trip to Gravity Trampoline Park and Gravity Social!

This year, the children and young people, along with their parent/s or carer, will be having a blast at Gravity Trampoline Park and Gravity Social.

With exclusive access to the trampolines in the morning, followed by lunch and then bowling & indoor golf, everyone is sure to have a great time!

More specific details about the activity, will be available closer to the time. For now, please take a look at Gravity's websites to build up your excitement:

BBS UK Annual General Meeting

Sunday 24th September 2023

Get involved with YOUR charity and support the work of BBS UK.

Financial Assistance to Attend the Conference

You may be eligible for funding to help support you to come to the conference if you meet the following criteria:

Those who are attending for the first-time and who meet the following criteria:

  • Currently living in England, Scotland, Wales, Northern Ireland and Republic of Ireland
  • Adult diagnosed with Bardet-Biedl syndrome or
  • Parent/carers of a child (0-17yrs) diagnosed with Bardet-Biedl syndrome (child must be living with applicant)
Eligible for any of the following benefits:
  • Universal Credit
  • Child Tax Credit
  • Working Tax Credit
  • Income Based Job Seekers Allowance
  • Income Related Employment Support Allowance
  • Income Support
  • Housing Benefit
  • Pension Credit

Getting to the Conference

By Rail

Northampton Station is approximately 15 minutes from the hotel and is serviced by a taxi rank.

By Road

The hotel is accessed directly off the A45, just off the M1.

By Plane

Birmingham Airport is approximately 50 miles (around one hour by car) from the Hilton, Northampton, via the M6 and M1.