More Information About FOP

Demographics of FOP

  • Genetic disease affecting 1 in 2 million people worldwide
  • No ethnic, racial, or religious patterns
  • 700 confirmed cases across the globe, from an estimated 2500
  • 45 known cases in the UK, 285 known cases in the United States

Clinical Characteristics of FOP

  • Characteristic malformations of the big toe
  • Flare-ups occur spontaneously or following bodily trauma such as: childhood immunisations, falls while playing, viral illnesses
  • Misdiagnosed in a majority of cases as cancer
  • Surgery makes the condition worse
  • There are no effective treatments

Finding a Cure and Treatment for FOP

  • Researchers at the University of Pennsylvania School of Medicine in the USA, the only laboratory in the US dedicated to FOP research, announced the discovery of the FOP Gene in Nature Genetics in April 2006
  • 3 principal investigators with 15 postdoctoral fellows, students, scientists and staff
  • Funds spent on research:approx. $1.5 million per year
  • 75% comes from FOP family fundraising and donations
  • 25% comes from institutional support (NIH/NIAMS, Orthopaedic Research and Education Foundation)