BBS UK Annual Conference
Our annual family conference weekend brings members of the BBS community together with researchers, clinicians, and other interested professionals for a weekend of learning, connection and shared experiences around Bardet-Biedl syndrome.
Attendees can look forward to inspiring speakers, research and clinical updates, personal stories, and plenty of opportunities to meet others in the community.
Weekend Family Conference 2026
Our next in-person conference will take place across the weekend of 25th-27th September 2026, at the Hilton Hotel, Northampton. We look forward to once again welcoming delegates from far and wide, for a weekend of learning and sharing experiences about all things BBS.
What to expect
This year's theme is Living Well with BBS. Throughout the weekend we will explore practical ways to support health, independence, wellbeing and quality of life, alongside learning about the latest developments in BBS research and care.
The conference includes:
- Research and clinical updates
- Practical workshops and discussions
- Lived experience and family perspectives
- Question and answer sessions with experts
- Advice and support from the BBS UK team
- Opportunities to meet other individuals and families living with BBS
- Activities for children and young people, including a trip to Whipsnade Zoo
Speakers and Workshops
Each year, our conference features a varied programme of research updates, clinical insights, lived experience, and practical discussions for people living with BBS and their families.
We're excited to confirm the following speakers and workshop facilitators, with additional speakers and sessions still to be announced.
Speakers:
- Scientific Progress and the Future of Living Well with BBS with Professor Phil Beales
- Targeting Metabolic Health in BBS with Professor Jeremy Tomlinson and Dr Melanie Kershaw
- Optimising Vision and Adaptive Strategies with Dr Helen Palmer
- Small Steps = Big Difference, a lived experience panel
Workshops
Adults with BBS
- Ask the Experts Q&A with Professor Phil Beales, Professor Jeremy Tomlinson, Dr Rupal Morjaria and Dr Shehla Mohammed
- Calming the Mind: Practical Mindfulness with Dr Emma McGibbon
- Good Choices, Small Changes, Easy Wins with Sarah Flack
- Explore Meta Glasses with Tommy Dean, Guide Dogs
- BBS UK Advice Service pre-booked appointments with the Advice Team
Parents and carers of children with BBS
- Developing Skills for Adulthood with Suzie McDonald and Terri Ann Bent
- Parent Advocacy Toolkit: EHCPs, SEND Navigation and Using AI to Stay Organised and Reduce Parent Overwhelm with Ghazala Anwer and Rebecca Perfect
- Optimising Vision and Adaptive Strategies with Paula Thomas, Eye Clinic Liaison Officer (ECLO), Great Ormond Street Hospital
- Living and Eating Well for Children with BBS and Hyperphagia with Sarah Flack
Carers
- Supporting the Carer: Planning Now for Caring into the Future with Rebecca Perfect
Watch from Home
The morning programme 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! Unfortunately we are unable to live-stream afternoon workshop sessions.
After the event, a recording of the conference will be available on our YouTube channel and website.
Registrations for the live stream will be open in the coming weeks.
How to book
Bookings for the 2026 conference are now open!
To request a place at the conference, please complete the online form. Bookings will be confirmed subject to availability.
Cost
The conference day, including lunch, refreshments and children's trip, 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
Accommodation
We have secured favourable rates on a limited number of rooms at the Hilton Hotel, Northampton. Please ensure your conference place is confirmed by BBS UK before booking with the hotel.
- A limited number of ‘Kids Go Free’ places are available on a first come first served basis
- The hotel has a small number of interconnecting rooms available on request.
To book your room, follow the steps below:
- Telephone the Hilton Hotel, Northampton on 01604 707586 or 01604 707511.
- Call Monday to Friday only between 9am and 5pm.
- Say you want to book accommodation for the BBS UK conference and ask to speak to Aimee.
- The team will have a booking form to complete for you, so make sure you have all your details and requirements ready. Ground floor rooms are limited so please only request if necessary.
- You will need a debit/credit card to secure your room, however no payment will be taken until check-out.
Alternative nearby hotels include:
- Holiday Inn Express Northampton
- Travelodge Northampton
- Premier Inn Northampton
Please note: due to the hotel's location, travel from nearby hotels will likely require a car or taxi.
Support to Attend
The Chris Humphreys Memorial Fund provides support for individuals and families who might otherwise find it difficult to attend.
The fund can cover accommodation costs for:
- Up to two parents/carers (children go free), or
- One adult with BBS and a personal assistant/carer
Applicants must be first time conference attendees and be in receipt of means tested benefits.
Find out more here.
Contact Information
If you have any questions about the conference please email [email protected] and a member of the team will come back to you as soon as possible.
We are really looking forward to bringing the BBS UK community together again this September, to connect, learn, and share. We hope you’ll be able to join us.
Getting to the Hilton Northampton
Address
Hilton Northampton
100 Watering Lane
Collingtree
Northampton
NN4 0XW
Website: https://www.hilton.com/en/hotels/ormnohn-hilton-northampton/
The Hilton Northampton is located just off the M1 motorway, approximately four miles from Northampton town centre.
Please note that the hotel is not accessible by public transport, so attendees will need to travel by car or taxi.
By Train
The nearest station is Northampton train station. From there, the hotel is approximately a 15 minute journey by taxi or car.
By Plane
The closest airport is London Luton Airport, approximately a 40 minute drive from the hotel.
Birmingham Airport is another option, around 45 to 60 minutes away by car depending on traffic.
By Car or Taxi
The hotel is conveniently located near the M1 and can be easily reached by car. Taxis are available from Northampton train station and surrounding areas.
Parking
On site self parking is available at the hotel and costs £8.00 per day. Electric vehicle charging is also available.
Conference Feedback
"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!"
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
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