MVA Society is pleased to welcome the New Year with a BBC News publication featuring George Bracey, the son of MVA Society's founder Jonathan Bracey. 🥳 Check out the link below! Happy New Year!🎇 https://lnkd.in/e973_dE9
MVA Society
Hospitals and Health Care
London, England 138 followers
Dedicated to understanding and supporting those affected by Mosaic Variegated Aneuploidy (MVA) syndrome
About us
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.
- Website
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mvasociety.org
External link for MVA Society
- Industry
- Hospitals and Health Care
- Company size
- 2-10 employees
- Headquarters
- London, England
- Type
- Nonprofit
- Founded
- 2024
Locations
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Primary
Get directions
London, England, GB
Employees at MVA Society
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Jonathan Bracey
We help Governments, companies and patients around the world get access to life-saving or life-changing medicines not available in the country they…
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Robert Keel
Executive Vice President at Tanner Pharma Group
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Kate Diston-Hunter
Pharma | Consultant | Business Mentor | Charity Trustee
Updates
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MVA Society reposted this
We help Governments, companies and patients around the world get access to life-saving or life-changing medicines not available in the country they live.
What a year! Last Christmas / New Year we were entrenched at GOSH on a mission to get George through his 9 rounds of chemo…with the next stop being a 5 mile journey south to Kings College Hospital for ground breaking surgery! Thanks to an amazing medical team and huge support from family, friends and of course Team George, George seems to finally be out of the woods and is on top form again! Thanks to Cancer Research UK (CRUK) for the great article below. George has been awarded the Cancer Research UK for Children & Young People Star Award for the courage he showed throughout his treatment. Youngest person treated by Nanoknife is cancer-free https://lnkd.in/eEZpedQg 2025 sees the launch of the MVA Society - the first charity dedicated to look into the ultra rare condition Mosaic Variegated Aneuploidy syndrome - which is the underlying condition George has (which lead to his cancer). We have an amazing team supporting this charity already, and this year we will start out on the journey to define a research strategy to begin to look for a treatment (currently there is no treatment). Here’s to very happy - and more importantly healthy 2025 for us all ❤️🩹 #raredisease #mvasociety #teamgeorge
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MVA Society is pleased to announce that we have been featured in an article by Cancer Research UK (CRUK). 🙌 Check out the link below, share your thoughts, and spread the word about MVA with colleagues and loved ones! 📰 https://lnkd.in/ezyDYZKV
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MVA Society is grateful to announce that we have received two generous donations on behalf of Tanner Pharma Group and Rilee Humphries. These donations mark a significant milestone since MVA Society received approval for charity status last month! We are extremely grateful for the continuous support Tanner Pharma Group has shown toward MVA Society, and we look forward to benefiting from this partnership in the future!
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MVA Society is excited to announce our latest feature in an article by RARE Revolution Magazine, an award-winning publication that sheds light on the individual stories of rare disease patients, their caregivers, and affiliated charities. Check it out here: https://lnkd.in/dpCX35TT. 🤳
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Great work Mary-Pope! Katie Dudley - thank you for all your help with this!! Very much appreciated. 🙌🏻
MVA Society is pleased to announce that we are now a registered charity!
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MVA Society is pleased to announce that we are now a registered charity!
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MVA Society is excited to announce our membership into EURORDIS-Rare Diseases Europe, an international alliance of non-profits determined to improve the lives of individuals with rare diseases.🌎 We look forward to our collaboration with EURORDIS-Rare Diseases Europe to improve advocacy for MVA and shape the policy agenda for MVA patients. 🤝
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MVA Society is thrilled to announce our partnership with Gene People! 🎉 Gene People is a genetic-condition support network dedicated to bettering the lives of individuals and families affected by genetic disorders. Their Genetic-Counsellor-led Helpline serves to educate patients, families, and the broader community and connect them to condition-specific resources.🫂 We look forward to this partnership!👏
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Have you checked out the Autumn 2024 Issue of Unique Magazine? 🔬 The story of George Bracey, the son of MVA Society founder Jonathan Bracey, was featured! 🎉 The article details George’s journey with MVA, including information about his diagnosis and treatment. 📖 Take a look at the article below on pages 15-17! 🤳
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