A full list of those researching FOP around the world will be available soon.  If you are involved in FOP research and would like to be included on this list please contact us.

United States of America

- University of Pennsylvania
- Harvard University

United Kingdom

- University of Oxford

FOP Collaborative Research Partners

Physicians and scientists from Aberdeen, Amsterdam, Athens, Austin, Berlin, Boston, Buenos Aires, Beijing, Chicago, Dallas, Genoa, Garmisch, Glasgow, Los Angeles, London, Melbourne, Nashville, New York, Oxford, Paris, Providence, San Francisco, São Paulo, Seoul, Stockholm, Sydney and Tokyo, Japan and many more. 

PUBMED List of FOP Research


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Anti-Activin A now in trial

June 2016

Following on from the promising studies in mice, US biotechnology company, Regeneron, is running the first clinical trial of anti-Activin A antibody (REGN2477) in humans. This study in healthy volunteers started in Belgium in June 2016. Palovarotene top-line results & phase 2 study extended 

Phase 2 study of palovarotene

October 2016

In mid-October pharmaceutical company Clementia announced the top-line results of its phase 2 study of palovarotene. The drug has shown positive trends in reducing bone formation and the pain and severity of flare-ups in those with FOP. Although these trends were not found to be statistically significant this is still positive news. Showing that something is statistically significant is a challenge for all trials of rare diseases, where the number of participants (40 in this trial) makes it harder to prove significant trends. Clementia is extending its phase 2 study of palovarotene to test new dosing regimens and is recruiting 20 new trial participants, and the company will be running a phase 3 trial next year. Participants in the extension of the phase 2 trial must be adults or teenagers who are 90% fully grown, and must live in the UK, France, Canada or Argentina. The UK trial centre is Royal National Orthopaedic Hospital in London. To find out more visit

The FOP Connection Registry turns 1

July 2016

On 29 July the FOP Connection Registry was officially one. In their first year they have managed to register 178 patients from 28 different countries. The registry will be a valuable resource to support FOP research in the future and we encourage all FOP patients to join if you haven’t already. To sign up go to

EURODIS Rare Barometer Voices launches first survey

September 2016

The Rare Barometer Voices initiative aims to strengthen the voice of rare disease patients in Europe and transform your opinions and experiences into facts and figures that can be shared with policy makers and other influential figures. The first survey to assess the impact of rare diseases on daily life was opened in September and is open to patients, parents, siblings or other family members. To find out more go to

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