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!

How to book

Booking will once again be in two parts:

1. Book your place with BBS UK

This is essential; we are nearing full capacity and typically sell out. Please ensure you receive confirmation of your place from us before booking accommodation.

Click here to complete the online booking form.

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: £50

Watch from Home

Livestream Registration OPEN NOW!

The conference will be 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!

In the afternoon, we are splitting the session into two groups, to allow for more targeted presentations - one for adults living with BBS and one for parents of children and young people living with BBS.

Adults with BBS will only need to register for the one Zoom link, and they can stay on that link for their afternoon sessions.

Parents/carers of children with BBS will need to register for an additional link to join their afternoon sessions.

All livestream attendees should register here

Parents and carers should also register here

If you have any questions about this, please contact us.

After the event, a recording of the conference will be available on our YouTube channel and website.

Programme

We have an exciting programme of speakers, updates on BBS research, clinical management, personal perspectives and much more!

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.

Weekend programme of events

Computer friendly version: WORD and PDF

Phone friendly version: WORD and PDF

Livestream programme of events

Computer friendly version: WORD and PDF

Phone friendly version: WORD and PDF

Speaker highlights:

• 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
• Staying Safe Online: Sophie Corness, RNC
• Personal Perspectives: Stefan Crocker and Emily Bartell
• Thinking about food: Sarah Flack, GOSH and Dr Emma McGibbon, GSTT
• Supporting Transition to Adulthood: Marie McGee, BCH and Anna Smith, RareMinds
• Habilitation: What to Expect in Your Child's Mobility & Independence Programme: Suzy McDonald, Habilitation VI UK

Children and young people

For the children and young people, we are planning a fun day out at Drayton Manor Theme Park. All children will need to be accompanied by an adult/carer. For our younger guests, an on-site creche will be available.

We have limited spaces left on the coach, so please book your place now to avoid disappointment.

Contact Information

If you have any questions about this event please email [email protected] and we will come back to  you as soon as we can.  Please note we will be out of the office from Monday 23rd December, returning Monday 6th January.

2. Book your accommodation

We have a block of rooms held at the Hilton Hotel on a dinner, bed and breakfast basis. To book your room, call the Hilton team on the following numbers, Monday to Friday, 9am-5pm:

01604 707511

01604 707586

Hotel Tariff:

• Single Room - Dinner/ Bed/breakfast - £119.00 per room per night                      For 1 person
• Double/Twin/Family Room - Dinner/Bed/breakfast - £177.00 per room per night
  For 2 persons sharing

A limited number of ‘Kids Go Free’ places (up to 17yrs) are available on a first come first served basis, otherwise the following charges will apply:

• Per child in room (6-15yrs) Dinner/Bed/Breakfast £15 per night
• Per Additional adult (16yrs+) Dinner/Bed/Breakfast £35 per night
• The hotel has a small number of interconnecting rooms available on request.
• Z beds are available at an additional price of £20.00.

Financial Assistance

The Chris Humphreys Memorial Fund provides financial assistance towards accommodation costs for first time conference attendees who are in receipt of means tested benefits.  Click here to for more information and for how to apply.

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.’ 

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.