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 purpose of the Canadian FOP Network (CFOPN) is to increase awareness, education, research, support and advocacy to help find a cure while maximizing the quality of life of individuals with FOP and their families in Canada.
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.
It imprisons its victims in a "SECOND SKELETON"
It is estimated that only 1 in every 2 million are affected by this rare disorder (2,500 worldwide). Although most children with FOP are born with a malformation in the great toe, few doctors are aware of the FOP disorder. The average time to correctly diagnose is 4 years. Misdiagnoses such as cancer often lead to surgical procedures causing further bone growth.
Dr. Frederick Kaplan and Researchers at the University of Pennsylvania School of Medicine discovered the FOP gene in April 2006. This important discovery is relevant, not only for patients with FOP, but for those with more common musculoskeletal conditions like osteoporosis, hip replacement surgery, and other forms of heterotopic ossification that occur in trauma and burn victims.
The potentials surrounding research of a gene that can turn one organ (muscle) into another organ (bone) are profound. Discovering the secrets within these rare children will have a major impact on the study of skeletal biology and regenerative medicine and one day benefit millions.
The purpose of the Canadian FOP Network (CFOPN) is to increase awareness, education, research, support and advocacy to help find a cure while maximizing the quality of life of individuals with FOP and their families in Canada.
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.
It imprisons its victims in a "SECOND SKELETON"
It is estimated that only 1 in every 2 million are affected by this rare disorder (2,500 worldwide). Although most children with FOP are born with a malformation in the great toe, few doctors are aware of the FOP disorder. The average time to correctly diagnose is 4 years. Misdiagnoses such as cancer often lead to surgical procedures causing further bone growth.
Dr. Frederick Kaplan and Researchers at the University of Pennsylvania School of Medicine discovered the FOP gene in April 2006. This important discovery is relevant, not only for patients with FOP, but for those with more common musculoskeletal conditions like osteoporosis, hip replacement surgery, and other forms of heterotopic ossification that occur in trauma and burn victims.
The potentials surrounding research of a gene that can turn one organ (muscle) into another organ (bone) are profound. Discovering the secrets within these rare children will have a major impact on the study of skeletal biology and regenerative medicine and one day benefit millions.
