Community

Stories and latest news

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.

Iyad and Amir

George

​​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.

Play Video

A huge thank you to the Ipsen Foundation who have helped us put together this short film about MVA. We are extremely grateful for your time, help and creativity.

We hope 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.

Latest News

podcast

Jonathan Bracey podcast with Every Connection Counts

19/11/2025
Every Connection Counts is a global performance consultancy specialising in improving communication. In this deeply moving conversation, Jonathan speaks with host Toni Jennings about what it means to stay curious...
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1st Anniversary Dinner

12/11/2025
On Wed 12th November, the MVA Society hosted their 1st Anniversary Charity Dinner at the prestigious RAC Club in London. The evening was superbly hosted by Hugh Brasher, CEO London...
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Jonathan Bracey talks at GCSG Conference

31/10/2025
Jonathan recently spoke at the Global Clinical Supplies Group (GCSG) Conference, giving the key note speech on the ‘patient voice’ – talking about George, his battle through cancer, his Mosaic...
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Success at the London Marathon

29/04/2025
On Sunday 27th April, Tash, Saj and JB joined 50,000 other runners for the London Marathon. The difference though is that these 3 lucky runners were running for the MVA...