FDF Presents Patient Registry Poster at NORD Summit in DC
Foundation News Research NewsThe Fibrous Dysplasia Foundation (FDF) strives to advance FD/MAS research and to ensure that the patient voice remains in the center of scientific advancements. In an effort to further both of these goals, FDF attended the National Organization of Rare Disorders (NORD’s) annual summit in Washington, DC this November. There, Teneasha Washington, FDF’s Research Programs […]
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Registry Week 2018 Marks Two Years of Progress
Foundation News Research NewsLast month, FDF celebrated Registry Week in honor of the 2nd anniversary of the launch of the FD/MAS Patient Registry. The 2nd anniversary is more than a symbolic landmark: it was the first “longitudinal interval,” or the first time that study participants were asked to update their information so that researchers are able to study […]
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We’re Celebrating BIG with Registry Week!
Foundation News Research NewsThe FD/MAS Patient Registry is turning 2 on Wednesday, October 31st and we’re celebrating big with Registry Week! Since the Registry launched in 2016, 680 patients and caregivers have signed up to be a part of this study and contributed over 100,000 data points. That’s 100,000 ways that scientists and researchers can learn more about […]
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FD/MAS Registry is Ready for Researchers
Foundation News Research NewsAs the FD/MAS community continues to share their stories and medical experiences through the FD/MAS Patient Registry, the Registry is now large enough to power academic research. “Participants have contributed over 100,000 data points by filling out the surveys on fdmasregistry.org,” said Deanna Portero, FDF Executive Director, “All that patient-provided data offers a wealth of […]
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Researchers Pursue a Comparative Effectiveness Study with support from the FD/MAS Patient Registry.
Foundation News Research NewsThe FD/MAS Patient Registry has been gathering data for almost a full year. In July, Fibrous Dysplasia Foundation (FDF) received the exciting news that a team of researchers and patient advocates will rely on registry data to design and develop a research proposal. Together, FDF President Catherine Fairchild, President Emeritus Amanda Konradi, Phd, Andrea Burke […]
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Fibrous Dysplasia Foundation’s Rare Disease Day Wrap Up
Advocacy News Foundation NewsFebruary 28th, 2017 we celebrated International Rare Disease Day, an annual awareness day dedicated to elevating public understanding of rare diseases. This year’s theme was “research,” and the Fibrous Dysplasia Foundation (FDF) participated by raising money for FD/MAS research and gathering patient stories in the scientifically designed Patient Registry. The FDF also participated in Rare Disease […]
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FDF Selected for National Institutes of Health Pilot Program
Foundation News Research NewsThe Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS), NIH in collaboration with PatientCrossroads, Children Hospital of Philadelphia and WebMD, has launched a pilot program to establish a Global Rare Diseases Patient Registry and Data Repository (GRDR). The Fibrous Dysplasia is one of 15 organizations without a patient registry that […]
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