Friends With FOP

Posted by Karen Fibrodysplasia Ossificans Progressiva, which affects Miranda and her friend Erin Kate, has a prevalence of about 1 in 1.6 million people.  There are just over 700 people known to have FOP worldwide, with estimates of about 3500 total (in less developed countries, most aren't diagnosed).  With so few sufferers, FOP is considered an "ultra-rare" disorder - one of the rarest of the rare. A rare disorder like FOP barely registers on the public consciousness, if at all.  Families of those affected can't, and generally don't, expect widespread levels of concern about our disease.  FOP, however, is hardly the only ...