Annual Family Weekend and Conference

The Annual Family Weekend and Conference allows our widely dispersed national membership to meet together to share their thoughts, feelings and experiences. More importantly, this meeting offers the only opportunity to learn more about Bardet-Biedl Syndrome. For those who regularly attend and for those who will experience this opportunity for the first time, we welcome you to the first of many conferences, an opportunity to socialise, make lasting friendships and relax in the accepting environment of the Hilton Hotel, Northampton.

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 is centrally located for rail, road and air travel and has been home to our conferences for over 20 years. Many of the staff have been with us from the beginning and pride themselves on their service and exceptional attention to detail throughout the weekend.

Every year there is an excellent mix of speakers and facilitators including Professor Beales, who gives an overview of research and development in the world of BBS. Throughout the weekend there will be the usual opportunity for private and workshop discussions with a Dietician, Psychologist and Benefits Officer as well as members of the various BBS Clinics Teams. For our young members or for older members who do not wish to listen to the formal presentations, there will be the usual fun-filled trip to Drayton Manor to look forward to. We also provide a crèche facility to allow parents to attend the presentations. The children and young adults benefit hugely from being part of a group where they are no different to anyone else. 

To book your place, please download our booking form. Details of how to book your accommodation at the Hilton Hotel or a hotel of your choice is enclosed in this form. For further information please contact


Click to view / download the conference letter and booking form

Hello to my lovely BBS family.  I want to say a few words about our experience at our first BBS UK Family Conference.  I came with my husband and my three children.  The youngest of them has BBS10.  When we first arrived and parked our car, we got very emotional.  It was very hard seeing some of you using a cane or even seeing how much support some of you needed, thinking that could be our future as well.  But all of those mixed feelings disappeared very quickly.  After the first ten minutes I already felt much better.  I never saw so many lovely people in one place.

Everyone made us feel very welcome. Some of you walked up to me and said, "Hello, you are Tanja right?" because you remembered me from the Facebook support group.  It felt so nice not to feel like an outsider and made me feel a bit posh at the same time! It didn't take long to get into conversations and the best part was you all knew what I was talking about, I did not have to explain myself over and over again.  The conference itself was very meaningful but also emotional at the same time.  I learned a lot about my daughter’s condition. Knowing that lots of research about BBS is going on has given me a little hope for the future.

My children had a very enjoyable time as well.  I did not have to worry about them when they went to Drayton Manor and my youngest was looked after in the crèche.  It gave me and my husband a bit of time to ourselves.  The activities for the kids were very amusing for them, they joined in the fun while I was putting my baby to bed.  It was so nice to be reassured that my kids were looked after by lovely people who kept them busy with different activities.  Not only for the kids but there were lots of things going on for us as a family.  It was a shame that the weekend was over so quickly because we were enjoying ourselves a lot.  I am so glad that we took the decision to attend the BBS Conference because it felt like we had found our long lost family.  I'm already looking forward to next year’s conference and many more in the years ahead.  Thank you to you all for making our experience so special.

“People were so, so friendly, we have been made to feel so welcome. So many people have approached us and chatted.”

“I found the whole weekend an experience I will never forget, it was amazing.”

“Great variety of speakers, aimed at everybody.”

“Excellent crèche staff, very friendly and caring, with a great variety of activities.”

“The hotel staff were just brilliant and looked after us really well.”

“The concepts of the workshops and the professionals involved were excellent, however delegates spent too much time discussing poor diagnosis, which could be discussed in separate sessions maybe.”

“Really informative, without blinding us with science.”

“The care team are brilliant and my children really enjoyed their day out.”

“Children looked after very well with lots of things for them to do,”

“This weekend has given me the knowledge needed to provide support in the best way possible.”

“Everyone was so lovely and helpful, it is a great community you have set up as well as an amazing society.”

Hilton Hotel Northampton

100 Watering Lane,
Northampton, NN4 0XW

By Car

From the north or south take the turning for Junction 15 of the M1 Motorway and follow signs for the A45 towards the town centre. The hotel is situated 100 yards from the junction with access from Watering Lane.

By Bus and Rail

Northampton bus & rail stations are situated within Central Northampton.