Funding Research.
Building a Community.
Finding a Cure.

Dedicated to understanding and supporting those affected by Mosaic Variegated Aneuploidy (MVA) syndrome

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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.

George’s Story

When George was diagnosed with Mosaic Variegated Aneuploidy at just two years old, his family was told there were no treatments, no support networks, and almost no information available.

His journey inspired the creation of the MVA Society - to ensure no family faces this diagnosis alone again.

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Our impact at a glance

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£110,000 raised of a
£250,000 research funding
target - and counting

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2 active research projects
underway, with a third focused
on single-cell RNA sequencing in
development

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Fewer than 50 known lives
affected globally - and each one
matters deeply.

Headline news

A huge thank you to the Ipsen Foundation who have helped us put together this short film about MVA. We are extremely grateful for your time, help and creativity.

We hope the film helps explain the challenges of an ultra-rare disease diagnosis, living with such a rare condition and the ‘grit’ needed to search for a treatment.

Play Video