The power of relationships, collaboration, determination and hope
Dedicated to understanding and supporting those affected by Mosaic Variegated Aneuploidy (MVA) syndrome
headline news
Success at the London Marathon
We have raised £80k of our £250k total!
We have 2 research projects up and running – a worm model looking at drug repurposing, and secondly a looking at human cells with MVA and how certain types of food supplements impact these cells. We hope to have a 3rd study looking at single cell RNA sequencing kicking off soon!
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.
MVA is a chromosomal disorder characterised by growth delays, developmental challenges, and increased cancer risk. Due to its rarity, there is limited awareness, funding and specialised care for affected families.
We believe this is the first (and only!) dedicated organisation and website for MVA.
Our aims
Provide patient information & support
Create awareness and build a global community of patients, families, carers and medical community
Develop a research strategy to find a treatment to improve the lives of MVA patients.
If you are a new patient, please get in touch
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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.
In Partnership With
