BORN A HERO believes that a natural history study serves as a foundation of future research. It helps researchers understand the progression of the disease and serves as a guide for future research projects. We support data sharing because more research can be done if the data is available for other researchers to use. BORN A HERO has an amazing Medical Board. We have started a natural history study for Pfeiffer Syndrome and we are creating a national registry. We are also hosting an FGFR Syndromes research symposium with Seattle Children’s Research Institute, the American Society for Bone and Mineral Research, Dr. Ethylin Jabs, and Dr. Aris Economides.
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