FOP Friends’ aim is to further research into Fibrodysplasia Ossificans Progressiva (FOP) and related conditions by supporting current and future research projects.

We are the only UK charity which supports people who are living with FOP.  With first-hand experience of the challenges FOP brings, we are able to provide friendship for those living with this devastating diagnosis and connect families with others who truly understand.

We provide information, advocacy and support, as well as organise events for people living with FOP to come together.

We work to raise awareness of FOP within the medical community to prevent misdiagnosis and to improve the level of care patients receive.

We are internationally recognised and work alongside other patient organisations.

As a small charity, we receive no government or NHS funding so are grateful for each and every donation we receive.  Your generosity truly makes a difference.