Community
Stories and latest news
George's Story
“We were told nothing could be done, but with the right people and bold decisions, we changed the outcome.” – Jonathan
At just two years old, George was diagnosed with a rare liver cancer – rhabdomyosarcoma – and an ultra-rare genetic condition, Mosaic Variegated Aneuploidy (MVA) Syndrome.
With determination and the support of experts like Professor Anil Dhawan, George underwent a pioneering two-stage operation using Nano Knife Technology – becoming the first child in the UK to receive this treatment on the liver. Today, George is fit, healthy, and thriving.
A huge thank you to the Ipsen Foundation who have helped us put together this short film about MVA. The film helps explain the challenges of an ultra-rare disease diagnosis, living with such a rare condition and the ‘grit’ needed to search for a treatment.
MVA Matters
Periodically we update our progress, event and progress through an online newsletter called MVA Matters.
Real families. Real experiences.
At the MVA Society, we know that personal stories are as important as scientific research. They help families feel less alone, inspire hope, and show the tangible impact of expert care and pioneering treatment. Our Community and Stories hub shares the unique first-person experiences from children, adults, and their families.
Share Your Story
We want to hear from you. Whether you’re a patient, a parent, or a family member, your experience can inspire, inform, and help guide others in the MVA community. Please email us on info@mvasociety.org.
MVA in the News
Latest News
Rachel’s fundraiser
MVA’s first research conference
MVA Society does the London-Brighton bike ride
Tanner Pharma Group charity golf day
Meeting a family in Virginia
Reverend Kate Bottley is now a patron of MVA Society
