My life with FOP

It can be hard to understand what it is like to live with Fibrodysplasia Ossificans Progressiva. 

Members of our local and international community generously share their stories to help others understand the need for support, the need for research into effective treatments, and to help others feel less alone:


One of the youngest Australians with FOP currently, Jarvis and his mother Lara talked to Brisbane’s Courier-Mail about the experience of waiting for a research breakthrough whilst seeing his FOP progress.


In this profile written especially for FOP Australia members, South Australian man Derek shares moments from his life and how he has pursued his many achievements and interests whilst living with FOP.


One of our international friends, Jasmin, was featured on CNN in a story that also made it in to the Australian national media. You can hear more about and from our international community  here.

Lucy and Zoe:

Twin sisters Lucy and Zoe, from Northern Ireland, also shared their stories to help raise awareness and understanding about FOP. We were very excited to see this make headlines in Australia, and grateful to Lucy and Zoe for letting us share it  here.