In the past 25 years since the establishment of the international FOP community, collaboration has occurred amongst research groups in countries across the globe. The FOP Research Laboratory in the University of Pennsylvania was the first, created in 1992 and led by Professor Kaplan and Dr Eileen Shore.

The discovery of the FOP Gene was announced in April 2006 in Nature Genetics. The identification of the single gene mutation causing the runaway bone growth in FOP is helping unlock the secrets of many common skeletal conditions.

The FOP gene discovery means research efforts can now focus on a treatment and cure.

Researchers studying rare conditions are often rewarded with knowledge that can assist more common diseases. Scientific research into FOP, with the aim of halting the progression of FOP, has the potential to assist many more with more common conditions. These include osteoporosis, vascular calcification, and heterotopic ossification experienced by patients after trauma from burns, hip surgery and sports and war blast injuries.

People with FOP have generously provided blood and tissue samples and helped raise the necessary funding to sustain the research effort. The participation of as many people as possible in the FOP Connection Registry is also essential and we encourage patients and clinicians to enrol in this crucial IFOPA project which will be the foundation of future research progress.

Most research to date, is funded by FOP families, their friends and their communities. Research is a team effort on a worldwide scale, and could not take place without the efforts of all involved.

If you are interested in undertaking FOP related research in Australia, please contact FOP Australia for assistance and direction at