FOP research is advancing steadily, bringing hope to patients and families worldwide. In 2025, one of the biggest developments is the Phase 2 trial of the STOP-FOP study, which focuses on the drug saracatinib. Originally developed for other conditions, saracatinib has shown promise in reducing flare-ups and slowing abnormal bone growth in FOP.
Another promising candidate is INCB000928, which targets the ACVR1 mutation—the genetic cause of FOP. Preliminary trial data suggest this drug may help prevent new bone formation, offering a new path for targeted therapy. These studies mark a significant step toward personalized medicine for FOP.
Research isn’t limited to drugs. Scientists are also exploring gene-editing techniques such as CRISPR to one day correct the mutation at its source. Though these efforts are in early stages, they represent a bold and exciting frontier.
Imaging technologies are also improving, with non-invasive scans being developed to detect flare-ups early. Early intervention is crucial in FOP, and such tools can dramatically change how the disease is managed.
Thanks to the FOP Registry, real-world data collected from patients continue to inform researchers and guide study protocols. Meanwhile, more doctors and researchers are engaging with FOP studies, expanding the circle of experts who understand this condition.
There is still no cure—but the momentum is real. Each step in the research journey brings the FOP community closer to meaningful treatment options and a better quality of life.
To learn more, visit: https://foptrust.org/
For international resources, visit: https://www.ifopa.org/
