FOP Australia are proud to share this Community Report about the project undertaken in 2025 to characterise the experiences and needs of people living with Fibrodysplasia Ossificans Progressiva in Australia and New Zealand.
Taking lessons learned from our advocacy experiences in recent years, FOP Australia obtained an independent pharmaceutical industry research grant which enabled us to contract CaPPRe to conduct this project.
We are very grateful to all participants for enabling the collection of information to help FOP Australia, health professionals, government and other organisations understand what to do to better help people with FOP.
Image: Infographic project summary (click to expand)