Funding Research.
Building a Community.
Finding a Cure.
Dedicated to understanding and supporting those affected by Mosaic Variegated Aneuploidy (MVA) syndrome
MVA Research Conference
The first ever MVA Research Conference is taking place on Thu 17th Sep at Great Ormond Street Hospital, London. We have an amazing line up of confirmed speakers already including Brian North, Jan van Deursen, Marcos Malumbres, Will Foulkes, Andre Brown and our very own Harry Leitch.
To find out more about this event please contact jb@mvasociety.org
We are the only organisation in the world dedicated to Mosaic Variegated Aneuploidy (MVA) an ultra-rare genetic condition affecting fewer than 50 people worldwide.
Our charity is committed to funding focused research into MVA, ultimately enabling us to find treatments and a cure, whilst building a community of patients and their families along the way.
George’s Story
“We were told nothing could be done, but with the right people and bold decisions, we changed the outcome.” – Jonathan
At just two years old, George was diagnosed with a rare liver cancer – rhabdomyosarcoma – and an ultra-rare genetic condition, Mosaic Variegated Aneuploidy (MVA) Syndrome.
With determination and the support of experts like Professor Anil Dhawan, George underwent a pioneering two-stage operation using Nano Knife Technology – becoming the first child in the UK to receive this treatment on the liver. Today, George is fit, healthy, and thriving.
A huge thank you to the Ipsen Foundation who have helped us put together this short film about MVA. The film helps explain the challenges of an ultra-rare disease diagnosis, living with such a rare condition and the ‘grit’ needed to search for a treatment.
Our impact at a glance
£250k raised in 2025
£60k reached of 2026's £325k target
Active research collaboration with:
Creighton University Medical School, Omaha
Vall d'Hebron Institute of Oncology, Barcelona
MRC London Institute of Medical Sciences
Around 40 known cases globally, and every day we are growing this number to expand our community
The MVA Society had an amazing visit to the Chris Evans Breakfast Show on Virgin Radio on 2nd June. What a great guy and what a great opportunity to tell our story to a million people.
We were given plenty of airtime to talk about the amazing work we are doing for MVA, as well as creating a blueprint for other rare disease organisations facing a similar situation. You can hear the conversation below.
