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FOP Friends

FOP Friends’ aim is to further research into Fibrodysplasia Ossificans Progressiva (FOP) and related conditions by supporting current and future research projects, and support those living with FOP and their families. 2009 seems such a long time ago when our family was given the news that our first child, Oliver, had been born with fibrodysplasia ossificans progressiva (FOP). He was just one year old at the time. At that time there was a small patient group, FOP Action, but no UK charity dedicated to supporting FOP families and funding research. Along with our family and friends, we ran fundraising events to support research and raise awareness of FOP. Through this, we encountered barriers to accessing further help and funding from companies and organisations, so decided to become a fully registered charity. We received full charitable status in 2012.

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  • Other Rare Disease
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