MVA Society

We are the only organisation in the world dedicated to Mosaic Variegated Aneuploidy (MVA) syndrome, 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 a treatments, whilst building a community of patients and their families along the way.

We are based in London, UK, but take a deliberately global view on this condition due to its rarity! We have identified around 25 cases in the UK/EU and around the same number in the rest-of-the-world. Through collaboration and partnerships, we are building a global ‘ecosystem’ of patients, families, clinicians and scientist – and the research collaborations are driving us towards our goal of a treatment by 2030. We would love to hear from you!