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National Rare Diseases Registry System of China
Program Overview

National Rare Diseases Registry System of China(NRDRS), led by Peking Union Medical College Hosp bital (PUMCH, is a national rare diseases registry part of the nation's rare diseases infrastructure.

Key objectives include: to establish common standards and specification fo or rare disease registration; to form a rare diseases collaboration network by unifying nation's top hospitals with rare disease center of excellence; to collect data on rare diseases with relatively high prevalence and severity for research; and ultimately, to elevate the diagnosis and treatment standards of rare diseases in China.