Canadian FOP Network

The Canadian FOP Network is a registered charity and not-for-profit corporation in Canada. We provide information about the genetic condition fibrodysplasia ossificans progressiva (FOP) and support to families living with the disease. We also raise funds for research toward our greatest hope, effective treatments and an eventual cure for FOP!

September 2026 Newsletter

Our Mission

To educate the Canadian public, medical and scientific communities about FOP through communications media, seminars, workshops and medical clinics, and by facilitating the sharing of accurate information about FOP; and
To provide funds for “qualified donees” as defined in the Income Tax Act in order to contribute to research into FOP and treatments for FOP, thereby also advancing the treatments for other bone disorders.

What is Fibrodysplasia Ossificans Progressiva (FOP)?

One of the rarest, most disabling genetic conditions known to medicine, FOP causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another. There are approximately 28 known patients with FOP in Canada.

Watch this video to find out what life is like with FOP...

Tin Soldiers - the search for undiagnosed FOP patients around the world

Now more than ever we need to reach out and find all the Canadian FOP patients. New research estimates 1 in 1 million is the prevalence of FOP births or 40 in Canada. To help patients access medical therapies and treatment in Canada or share important drug trial information we need to have a complete patient registry. Please see the clip below on the Tin Soldier initiative and the important work they are doing globally to bring awareness and education.