Several research groups are collaborating to unravel this very rare, extremely disabling disease with one main goal: to develop a treatment option. Research is performed mainly in the USA, UK, Japan, Italy, France and the Netherlands. Researchers contact each other and patient organizations on a regular basis, to discuss their research. The last few years compounds have been discovered which might contribute to the treatment of FOP.

In 2017 VUmc discovered an important imaging modality which made it possible to visualize a flare-up for the first time. With this so called [18F]NaF PET/CT-scan an image can be obtained to show the activity of FOP, even in a very early stage of an ossifying flare-up before the new extraskeletal bone has been formed. Also, this method can be used for follow-up of the extraskeletal bone that has already been formed and it can monitor the effects of potential medicines. The scan is, unfortunately, not yet used broadly. National as well as International patients are already visiting and are welcome to visit VUmc for this special diagnostic method.

At VUmc  the FOP research team is using blood analysis, very small skin biopsies and teeth (when it comes available) to assess the activity of the disease, but also to  find alternative ways to understand and treat the disease and to try to predict the effect of a potential medicine before administration. Also, new potential medicines are tested which are proposed to stop or slow down progression of disease. 
The large genetic laboratory VUmc  is also involved in rare diseases research, especially to assess the mutation responsible for FOP and related bone diseases.

ZonMw, the Dutch FOP society and IFOPA give financial support for research focused on FOP. However, this is often barely enough to start with a study. Research is very expensive, especially in  rare diseases  it is hard to raise enough money to fund studies. Researchers need and  would be extremely thankful for your support! We work closely with the Dutch FOP patient society  "FOP stichting Nederland" ( For any donations we would like to ask you to donate to the Dutch FOP patient organization: Stichting Vrienden van FOP (translation: Friends of FOP) on account number: NL94 RABO 032 081 147. Donations made for research are often tax-deductible.