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.
Reverend Kate Bottley is now a patron of MVA Society
The MVA Society is delighted to announce that Rev’d Kate Bottley has agreed to be the Patron of our charity. Kate, on her Radio 2 program – Good Morning Sunday – has been a huge supporter of George through is battle with cancer, so we were naturally delighted when she agreed to be our Patron. We look forward to working with Kate over the coming months – more details to follow. Watch this space.
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.
