FOP Research Petition

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We reached the target! Thank you!

Thanks to the support of our amazing friends we reached the required target of signatures…

Click here to read the government’s response…

FOP is caused by a fault in the ACVR1 gene.  Most cases of FOP are new.  This gene mutation happens at conception: it is an accident of nature.


A combination of shortened or turned-in toes, along with unexplained swellings across the body, can be a key indicators of FOP.  A person may also have shortened thumbs.


FOP causes the body to develop extra unwanted bone to form in muscles, ligaments and soft tissue.  This creates painful swellings called flare-ups.  Where this occurs across joints, it progressively restricts the person’s movement.


Surgery is not possible to remove the extra bone as it could trigger further flare-ups. Once the bone has developed and movement is lost, there is no way to reverse it.


There is no treatment or cure for FOP, but there are a number of clinical trials with promising results, so HOPE is on the horizon.