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.
Last week we were blessed to be connected with Virginia and Andrea di Lallo, in Bologna, and their amazing children, Lavinia (7) and Valerio (5). Both children have MVA, but they are the happiest kids!
Our search for MVA families and patients is global. It has to be due to the ultra-rare nature of the condition. We now have direct contact with 5 children though.
With only ~50 reported cases worldwide, this now represents 10% of all known cases. Although, we think it’s very reasonable to deduce that the actual number is a lot higher (maybe 200+ globally?). This is the challenge with a very rare and unknown condition, that’s not routinely tested for and, (until now) hasn’t had a “community” to belong to.
The small, but mighty MVA Society is changing the landscape for our community. Our search for more patients, families, researchers, scientists, pharma & biotechs and clinicians is gaining momentum!
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.
