About MVA Society
The Only Charity in the World Dedicated to Mosaic Variegated Aneuploidy (MVA)
The MVA Society exists for one reason: to change the future for people living with Mosaic Variegated Aneuploidy - an ultra-rare genetic condition affecting fewer than 50 people worldwide.
Founded after one family's diagnosis revealed a complete lack of treatments, medical guidance or expert support, we are now the only dedicated global organisation supporting this condition. We’re here to change that reality.
Our Vision
We envision a future where everyone affected by MVA has access to effective treatments - and hope for a cure.
Our Mission
We fund ambitious research that brings real treatments for MVA closer - and we won’t stop until a treatment is found.
At the same time, we make sure no one faces this condition alone. We provide expert advocacy, trusted information, and hands-on support for families navigating the challenges of MVA - from diagnosis through every stage of life.
Sponsor strategic research toward treatments and cures for MVA
Provide comprehensive patient advocacy, expert advice, and essential information
Build a global community connecting patients, families, and medical professionals
Why we're different
No other organisation in the world is doing what we do for a condition that, until recently, had no support, no research, and no treatments.
- We serve the entire known global patient population
- We sponsor research that targets real treatments, not just academic interest.
- We facilitate world-first medical innovations
- We connect families to leading global experts
Find out more about us
Read more about what we do, the inspiration behind the charity and the people behind it.