International 22q Conference, Crete, July 2026
What we learned at the 2026 International 22q Conference
This summer, The Evelina London 22q Clinic clinical team travelled to Crete for the 22q International Conference — the world's largest gathering of doctors, researchers, therapists and families dedicated to 22q11.2 deletion syndrome. Experts came from more than 20 countries to share the latest research and, thanks to the Max Appeal, we were able to attend to bring that learning straight back to our clinic and to you.
Here are some of the things we thought you'd most want to know about.
Every child with 22q is different — and researchers are starting to understand why
One of the clearest messages from the conference was just how much variation there is between children with 22q, even within the same family. Scientists are getting much better at understanding why this happens — including how small differences in the exact bit of chromosome that's missing, along with each child's own individual genetic background and environment shape how 22q shows up in them. This isn't just interesting science — it's a step towards care that's more tailored to each child, rather than one-size-fits-all.
A related genetic change that could matter for some children
Researchers shared encouraging news about a related genetic condition called TANGO2 that a small number of children with 22q also have. When it's identified, it responds well to vitamin B supplementation. Guidelines on this are due to be published soon, and we'll make sure our clinic team is following the latest advice — so if this is relevant for your child, it will be picked up and managed as part of your usual care.
Updates for medical teams
Lots of medical research was shared from across the globe. We have taken away ideas for how we can make care for children with 22q even better. This includes making sure we have clear protocols in hospitals for monitoring calcium levels when children have operations. And making sure we are monitoring children’s spines correctly.
Speech, language and learning support really does make a difference
There was a lot of encouraging discussion about supporting communication and learning. Researchers reinforced that early, proactive support for speech and language — even before a child seems to be struggling — leads to better outcomes. There was also a strong focus on practical, everyday things that help: supporting working memory, social skills, and giving children tools to build friendships, since these matter enormously for confidence and independence later in life.
New tools to help explain 22q to children and schools
A team from Belgium shared a lovely resource called the "Genetic Puzzle" — a hands-on tool (and now an app) designed with families, to help explain 22q to children in an age-appropriate way, and to help schools understand what support a child might need. We're looking at whether something similar could be helpful for our own families and schools here.
A reminder that you're part of a much bigger community
Perhaps the most valuable thing about a conference like this is simply the reminder that 22q families and clinicians all over the world are working on the same questions, sharing what they learn, and pushing the science forward together. Research into 22q is active and growing, and the picture of how to support children and adults with 22q is getting clearer every year.
Thank you again to everyone who supports Max Appeal — your fundraising is what makes it possible for us to keep learning from the best in the world, and to bring that knowledge home to our 22q community.
Summary of key learning, prepared by Dr Alice Roueché, Clinical Lead, Evelina London 22q Clinic and Dr Julia Kenny, Consultant in Paediatric Infectious Diseases and Immunology, Evelina London Children’s Hospital.