Dedicated to understanding and supporting those affected by Mosaic Variegated Aneuploidy (MVA) syndrome
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:
- Act as a patient advocacy support and information resource
- Build a community of practise and patient cohort
- 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
The power of relationships, collaboration, determination and hope
The power of relationships, collaboration, determination and hope
Our aim is to create a UK-based charity with global reach, focused on enhancing the quality of life and health outcomes for children affected by MVA (Mosaic variegated aneuploidy syndrome), a rare genetic condition. 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.
The charity – called the MVA Society - will provide comprehensive support, awareness, and advocacy for children & families affected by this ultra rare genetic condition as well as funding research to better understand and treat the condition.
In Partnership With
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.
Approved Membership & Partnering Charities
