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A young boy with WAGR syndrome on a swing.

Collaborating to Advance Rare Diseases Research

NCATS and Harvard are collaborating to advance rare diseases research to benefit patients.

Work with Us

Find out more about how your organization can collaborate with the GRDR to advance rare diseases research.

Henrietta Hyatt-Knorr, M.A.


The aim of the GRDR program is to develop a Web-based resource that aggregates, secures and stores de-identified patient information from different registries for rare diseases, all in one place.

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About the GRDR

Find out how GRDR experts are creating a resource for rare diseases researchers across the world.

Common Data Elements

Learn about CDEs and why they are crucial to global patient registries.

GRDR Resources

Get more information about the GRDR and access data submission forms.

    Why the GRDR Matters

    The ultimate goal of the GRDR program is to provide a “one-stop shop” for rare disease data from registries across the world. Through the program, NCATS will give patients, health care professionals and researchers access to information about multiple rare diseases through one central resource. Studies driven by GRDR data could lead to improved therapeutic development and quality of life for the many people who have rare diseases.