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Collaboration
BORN A HERO believes that if all involved in rare disease research collaborate, we can avoid duplication of effort and accelerate research. To facilitate interdisciplinary communication, we partner with Seattle Children’s Research Institute to host the Seattle Rare Disease Fair. Researchers, practitioners, policy makers, and rare disease organizations are brought together to learn from each other.…
Improving Quality of Life
BORN A HERO supports FGFR patients and their families through the research we fund, our ABC Kind Program, our website, our Facebook pages, by supporting policies that help the rare disease community, and by raising awareness through educational materials and social media. Through these and other efforts, we provide emotional support and work to improve treatment of FGFR syndromes.…
Finding Connections
Seeking funding and finding researchers are some of the biggest challenges that the rare disease community faces. We believe that if researchers include a rare disease in the research that they are already pursuing, we can break some of these barriers. Finding connections between non-rare and rare diseases may lead to breakthroughs in research and treatment.…
Researching FGFR Syndromes
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.…
