Who are we and what is our purpose?


​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!
​
The Canadian FOP Network (CFOPN) was founded in 2008 by Carrie Connell, whose daughter Brooke had recently been diagnosed with FOP. Carrie learned that there was no organization in Canada focused on the disease, and she wanted to change that reality. Carrie started by sending letters to other families in Canada living with FOP, and she found out quickly that there was enthusiastic interest in forming a Canadian group! Before long, the first steps were taken toward Carrie’s goal. At present, the CFOPN is the premier location for information about FOP in Canada and has members across the country.

​Our mission is:
  • 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. 
Watch this video to find out what life is like with FOP...
​Photos from our FOP Family Meeting on June 12 and 13, 2025!
Huge thanks to our Gold Tier sponsors:
Picture




​Tin Soldiers - Searching for the Undiagnosed around the world and in Canada
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.

Videos from our Global FOP Community

 Our Expert Partner - The International FOP Association (IFOPA)

Picture