What is a registry and why are they so important to the rare disease community? Together, NORD and the Critical Path Institute (C-Path) created this video to explain the value in registries and why patients and patient organizations should participate in them.
Registry data can now be shared through their collaborative platform, the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP), to help speed the development of new treatments for rare diseases. Learn more: [ Ссылка ]
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