Funding Research.
Building a Community.
Finding a Cure.
Dedicated to understanding and supporting those affected by Mosaic Variegated Aneuploidy (MVA) syndrome
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.
Our impact at a glance
In 2005 we raised £250k. So far, we have reached £250k of our 2026 target of £350k.
Active research collaboration with:
Creighton University Medical School, Omaha
Vall d'Hebron Institute of Oncology, Barcelona
MRC London Institute of Medical Sciences, Sage Bionetworks.
There are around 50 known cases globally, and we have met with 5 patients (10% of the known population). Every day we are growing this number to expand our community.
QuickSTAT choose us as their charity of the year
The MVA Society is delighted to announce that QuickSTAT have chosen us to be their Charity of the Year for 2027.
New York Marathon
Huge thanks to Jonathan Waring-Hughes and Darren Leaver for getting their trainers on and helping us by taking on this race.
Chicago Marathon
What an awesome race it was. Noise. Energy. Community. Just as marathons should be. 10/10 Chicago.
What have we been up to?
It's been a busy time for us, appearing on Chris Evans's radio show, meeting the prime minister and various celebs, whilst doing sponsored events to raise awareness and money.
Here's a short video montage to show what the small but mighty MVA Society has been doing recently, and what we have planned.