Funding Research.
Building a Community.
Finding a Cure.
Dedicated to understanding and supporting those affected by Mosaic Variegated Aneuploidy (MVA) syndrome
What have we been up to?
It's been a busy time for us, appearing on Chris Evans's radio show, meeting the prime minister and various celebs, whilst doing sponsored events to raise awareness and money.
Here's a short video montage to show what the small but mighty MVA Society has been doing recently, and what we have planned.
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.
Last week we were blessed to be connected with Virginia and Andrea di Lallo, in Bologna, and their amazing children, Lavinia (7) and Valerio (5). Both children have MVA, but they are the happiest kids!
Our search for MVA families and patients is global. It has to be due to the ultra-rare nature of the condition. We now have direct contact with 5 children though.
With only ~50 reported cases worldwide, this now represents 10% of all known cases. Although, we think it’s very reasonable to deduce that the actual number is a lot higher (maybe 200+ globally?). This is the challenge with a very rare and unknown condition, that’s not routinely tested for and, (until now) hasn’t had a “community” to belong to.
The small, but mighty MVA Society is changing the landscape for our community. Our search for more patients, families, researchers, scientists, pharma & biotechs and clinicians is gaining momentum!
Our impact at a glance
£250k raised in 2025
£60k reached of 2026's £325k target
Active research collaboration with:
Creighton University Medical School, Omaha
Vall d'Hebron Institute of Oncology, Barcelona
MRC London Institute of Medical Sciences
Around 40 known cases globally, and every day we are growing this number to expand our community
MVA Society does the London-Brighton bike ride
13th Sep, the small but mighty MVA Society took on the London-Brighton bike ride in conjunction with Tanner Pharma Group. park.
Tanner Pharma Group charity golf day
On Friday 4th September, Tanner Pharma Group held their annual charity golf day – and this year the MVA Society was the lucky beneficiary.
Reverend Kate Bottley is now a patron of MVA Society
The MVA Society is delighted to announce that Rev’d Kate Bottley has agreed to be the Patron of our charity.