Welcome
The Canadian FOP Network (CFOPN) is non-profit volunteer organization made up of parents of children with Fibrodysplasia Ossificans Progressiva (FOP), youth and adults with FOP, caregivers, family members and friends.
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.
CFOPN is proud to work alongside the International FOP Association (IFOPA) www.ifopa.org, an expert organization dedicated to supporting families around the world with this ultra-rare genetic disease, to raise much needed funds to achieve these goals.
FOP is one of the most disabling musculoskeletal conditions known to mankind. It is a rare progressive disease causing bone to form in muscles, tendons, ligaments and other connective tissues.
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.
CFOPN is proud to work alongside the International FOP Association (IFOPA) www.ifopa.org, an expert organization dedicated to supporting families around the world with this ultra-rare genetic disease, to raise much needed funds to achieve these goals.
FOP is one of the most disabling musculoskeletal conditions known to mankind. It is a rare progressive disease causing bone to form in muscles, tendons, ligaments and other connective tissues.
Our office address is:
19 - 13085 Yonge Street, MB 107
Richmond Hill, ON
L4E 0K2
You can email us at: [email protected]
19 - 13085 Yonge Street, MB 107
Richmond Hill, ON
L4E 0K2
You can email us at: [email protected]
To join the Canadian FOP Network, please send us an email message with your details. Membership is free.
Photos from our June 2025 CFOPN Family Meeting
Huge thanks to our Gold Tier sponsors . . .
