Dr. Alberto Hidalgo-Bravo first learned about fibrodysplasia ossificans progressiva (FOP) during his genetics residency. But he didn’t treat a patient with FOP until years into his practice.
In 2014, he learned about the IFOPA thanks to the mother of one of his young patients. Since then, he has attended two Family Gatherings and participated in the FOP Drug Development Forum (DDF). He currently works at the Instituto Nacional de Rehabilitación in Mexico City, which hosts the only laboratory in the public health system in Mexico performing the molecular test for diagnosing FOP.
Dr. Hidalgo-Bravo has also relied on our FOP Registry to understand how individuals manage their symptoms, informing his care and communication with patients.
“Becoming part of the FOP Family gathering and DDF has been the most gratifying experience of my professional life,” he said. “Being a member of the FOP community could be the most important achievement of my life as a doctor.”
Since FOP is an ultra-rare disease, many doctors might not have the opportunity to learn about FOP in medical school or during their residency like Dr. Hidalgo-Bravo did.
When doctors are unaware of FOP or what life is like for patients with FOP, early symptoms are missed which can lead to misdiagnosis and even harmful treatments.
That’s why the IFOPA is passionate about working alongside doctors and sharing resources with the medical community. We’re so thankful for incredible doctors like Dr. Hidalgo-Bravo who share our goals of finding treatments and, ultimately, a cure for FOP.
If you’re a doctor in our community, we are here to be a resource to you! When families have access to doctors who know and care about FOP, we can all look forward to a brighter future.
Resource Hub for Medical Professionals
“There are a lot of people fighting alongside you looking to improve your quality of life and we want to see you as happy as possible,” Dr. Hidalgo-Bravo said, speaking to patients. “FOP patients are the example and the motivation for us to go and face every day.”
