MVA Society brings researchers together to tackle ultra-rare condition
The conference will cover disease modeling, drug repurposing, patient registries, clinical management, and international clinical experience, with the aim of bringing currently fragmented expertise together and agreeing practical research priorities
3 Sept 2026
Clinicians and researchers from around the world will meet at Great Ormond Street Hospital (GOSH), London, UK, on September 17, 2026 for the inaugural MVA Research Conference hosted by the MVA Society.
Fewer than 50 people worldwide are known to have mosaic variegated aneuploidy (MVA), an ultra-rare genetic condition that affects the way cells divide and grow. This can result in some cells having the wrong number of chromosomes, which may cause growth and developmental differences, learning disabilities and an increased risk of certain cancers.
With such a small global patient population, research, specialist expertise and clinical experience are fragmented, and there is no agreed treatment and support pathway. The conference has been created to address those gaps, identify shared priorities and establish practical next steps for research, treatment and care.
Jonathan Bracey MVA Society founder said, “Bringing international experts together to focus on MVA disease modelling, novel therapeutic strategies, patient registries and cohorts, and clinical management is a significant step. For us, the real measure of success is what leaves the room: new collaborations, clearer priorities and practical next steps that can move MVA towards better treatments and care.”
Speakers include Jan van Deursen, Brian North, Marcos Malumbres, Andre Brown, Will Foulkes, Audrey Putoux, Ciaran McCarthy, Shinya Matsuura, Silvia Natsuko Akutsu, Harry Leitch and Mel Dixon.
Discussions will cover disease modeling and drug repurposing, alongside the UK MVA National Audit and international clinical experience. Mel Dixon, founder and CEO of Cure DHDDS, will also share her experience of building a pathway towards treatment for another ultra-rare genetic condition where none previously existed, providing a practical example of what can be achieved from the ground up.
Bracey added, “By bringing together the people, research and experience around MVA, we can identify practical next steps towards a clearer treatment and support pathway. It is all part of what MVA Society is here to do: fund research, build a community and, ultimately, find a cure.”
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What is mosaic variegated aneuploidy (MVA), and how does it affect patients?
Mosaic Variegated Aneuploidy is an ultra-rare genetic condition affecting cell division and growth. Some cells may have the wrong number of chromosomes, potentially causing growth and developmental differences, learning disabilities and an increased risk of certain cancers. Fewer than 50 people worldwide are known to have MVA.
When and where is the inaugural MVA Research Conference taking place?
The MVA Society will host the inaugural MVA Research Conference at Great Ormond Street Hospital (GOSH) on September 17, 2026. Clinicians and researchers from around the world will discuss MVA disease modeling, drug repurposing, therapeutic strategies, patient registries, clinical management, the UK MVA National Audit and international clinical experience.
What does the MVA Society aim to achieve through the MVA Research Conference?
The conference aims to unite fragmented MVA research, expertise and clinical experience, identify shared priorities and establish practical next steps for treatment and care. Founded by Jonathan Bracey in 2024, the MVA Society seeks to fund research, build a community, develop a clearer treatment and support pathway and, ultimately, find a cure.