Building a Registry for Rare Disorders
Author(s)
Vanessa Rangel Miller
Document Description
Supplemental material to accompany the panel presentation "Building a Registry for Rare Disorders: The Importance of Fitting into a Global System" during Research Daylong Symposium.
Date Added
July 15, 2009
Keywords
Genetic Alliance annual conference 2009, Discovering Openness in Health Systems, research daylong symposium, patient registry, community registry, DuchenneConnect Registry, friedreich's ataxia research alliance (fara)
Return to search results
Document Description
Supplemental material to accompany the panel presentation "Building a Registry for Rare Disorders: The Importance of Fitting into a Global System" during Research Daylong Symposium.
Date Added
July 15, 2009
Keywords
Genetic Alliance annual conference 2009, Discovering Openness in Health Systems, research daylong symposium, patient registry, community registry, DuchenneConnect Registry, friedreich's ataxia research alliance (fara)