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NCATS Programs & Initiatives

General Program Contacts, Office of Rare Diseases Research

Area of Expertise


Phone Number

Rare Diseases Clinical Research Network (RDCRN)

Tiina K. Urv, Ph.D.

(301) 827-2746

RDCRN/Coalition of Patient Advocacy Groups (RDCRN/CPAG)

Chris Griffin, B.A.

(301) 496-0266

NCATS Genetic and Rare Diseases (GARD) Information Center  

Henrietta Hyatt-Knorr, M.A.

(301) 435-6045

Toolkit Project

Henrietta Hyatt-Knorr, M.A.

(301) 435-6045

Global Rare Diseases Registry/Rare Diseases Registry Project

Henrietta Hyatt-Knorr, M.A.

(301) 435-6045

NCATS Scientific Conferences

Anne Pariser, M.D.

(301) 402-4338

All Other Inquiries

Henrietta Hyatt-Knorr, M.A.

(301) 435-6045


Last updated: 11-02-2017
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