The MVA Society has been set up as a patient advocacy site to establish a focal point for the ultra-rare genetic condition Mosaic Variegated Aneuploidy syndrome. We believe this is the first (and only!) dedicated organisation and site for MVA.

The aims of the MVA Society are 3 fold:

1.  Act as a patient advocacy support and information resource
2.  Build a community of practise and patient cohort
3.  Investigate research into screening, surveillance and treatment of MVA
We would love to hear from you – please feel free to contact us on info@mvasociety.org

George's Story
The Founder, Jonathan Bracey (JB) set up this charity after his son, George, was diagnosed with this condition in August 2023. George was 2 years old at the time. He was diagnosed under the R14 genome sequencing testing carried out under the NHS in London. However, the information and dedicated support for MVA was extremely limited, so he decided to set up The MVA Society to redress that balance.

MVA Society

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