FOP Friends' aim is to further research into Fibrodysplasia Ossificans Progressiva (FOP) and related conditions by supporting current and future research projects together with supporting families impacted. Activities include supporting fundraisers, holding fund raising events, biennial conferences, family weekend and working with doctors and researcher to find a treatment and cure.
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Total raised so far £7,143
+ est. £5.00
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0We are FOP Friends! We are the UK's only charity which is dedicated to supporting those who are living with the rare genetic condition, fibrodysplasia ossificans progressiva, or FOP.
FOP affects just one in a million people. It a condition whereby the body makes new bone in the wrong place. Muscles and soft tissue are turned into bone. Over time, this restricts a person's movement, eventually imprisoning them in a second skeleton: a healthy mind trapped inside a frozen body.