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FDMAS Patient Registry

Registry Data Fuels New Research

Foundation News Research News

2018 is the first year that the FD/MAS Patient Registry accepted applications from researchers to use the Registry for research projects, and the immediate interest has exceeded all expectations. Thanks to the 800+ patients and caregivers who have registered in the study and contributed over 100,000 data points, researchers are using the FD/MAS Patient Registry […]

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Researchers Pursue a Comparative Effectiveness Study with support from the FD/MAS Patient Registry.

Foundation News Research News

The 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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