Fibrodysplasia ossificans progressiva (FOP) is an ultra-rare genetic disorder that turns soft tissue to bone. A recently completed multi-year study, published on September 24, 2022 in Genetics in Medicine, will finally provide doctors the information they need to greatly improve disease identification and patient care. Early diagnosis is essential for a child with FOP, but this has rarely been easy. The symptoms can easily be mistaken for those of other diseases; FOP is ultra-rare, affecting only 1 in 1.4 million people1, so many health-care professionals (HCPs) are unaware of it. But it is important to raise awareness: FOP causes cumulative disability and pain, and shortens lifespan. An accurate diagnosis is critical to maximize a patient’s long-term health by managing their exposure to risk and potentially harmful interventions.