At our last conference in 2019 some attendees gave us an idea of why it's a great event and how important it is to our community.
Daniella Vandepeer, family member
"Conferences like this are really, really important for families all to get together and just be together, share their issues and problems let their troubles go. Enjoy the children. Going out on the excursion and just for families to kick back, get some really important information and to chill out a little bit and enjoy."
Prof Brian Bigger, Professor of Cell and Gene Therapy
"You know, I find some of these conferences are really inspirational because you get to meet so many people, kids and adults with the disease. I think that actually, it's useful for us as scientists. It's great to see the clinicians here as well, and it's brilliant to see the families and the patients too."
Jean Mercer, Clinical Nurse Specialist
"In clinic you haven't got the time to talk and to think about things, to ruminate and to ask questions as much. And that's what the opportunities given here for them."
Fiona Stewart, Former Consultant in Clinical Genetics
"It’s such an important thing, you know, the families and the professionals all getting together, with the Society team. So it's great and I hope to be coming for many more years."
How you can help
We are thrilled to be taking part in The Big Give Christmas Challenge once again this year with the potential to raise an incredible £25,000!
From 12 midday on Tuesday 3 December to 12 midday Tuesday 10 December donations made to us via The Big Give website will be matched pound-for-pound; this means a donation to us could go twice as far and help fund our family events over 2025.
