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.
Company Details
- Employees
- 4
- Founded
- -
- Address
- London, England, Gb
- Industry
- Hospitals And Health Care
- NAICS
-
Health Care and Social AssistanceSocial Assistance
- Website
- http://mvasociety.org
- Keywords
- Community People.
- HQ
- London, England
Mva Society Questions
Mva Society's website is http://mvasociety.org
Mva Society's LinkedIn profile is https://uk.linkedin.com/company/mva-society
Mva Society has
4 employees.
View email and phone details for 4
employees at Mva Society.
Mva Society's industry is
Hospitals and Health Care
Mva Society's top competitors are
Pura Foundation Australia,
Community People,
Duke Makes,
Eurordis-Rare Diseases Europe,
Diima Gmbh,
Tanner Pharma Group,
Imn Fides Consultancy,
Mint Business Club,
Astrazeneca,
Touch Switzerland.
Mva Society's categories are Hospitals and Health Care
Mva Society's founding year is 2024
