FOP Friends was founded by the parents of Oliver, when he was diagnosed with FOP just after his first birthday.  FOP Friends' trustees are all directly connected to someone living with FOP.  

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.

FOP Friends offers practical guidance and heartfelt reflections through collaborative efforts, bridging the worlds of education and healthcare.  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.

FOP Friends is a guiding light for everyone affected by FOP, illustrating how unity within a small community can make a profound difference in the face of adversity.