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May 18, 2017 

Ronald Reagan Building and International Trade Center
1300 Pennsylvania Ave. NW
Washington, D.C. 20004

The 2017 Rare Impact Awards will be hosted in the amphitheater of the Ronald Reagan Building and International Trade Center, the largest structure in D.C. and the first and only federal building dedicated to both federal and private use. More than 350 distinguished guests are expected to attend. The event will serve as a fundraiser to support NORD’s mission of providing education, advocacy, patient support and research to help all people with rare diseases. There are approximately 7,000 known rare diseases, most of which are life-altering and do not yet have a treatment. Scroll down to view all 2017 Rare Impact Award Honorees. 

Room Block

JW Marriott
1331 Pennsylvania Ave. NW
Washington, D.C. 20004

UPDATE: NORD’s Hotel Room Block is now CLOSED.



Click here to express your interest in sponsoring the 2017 Rare Impact Awards.


2017 Award Recipients

Rare Impact Award Honorees

The Honorable Diana DeGette (D-CO)
National Health Leader

The Honorable Johnny Isakson (R-GA)
National Health Leader

A Twist of Fate – ATS
Patient Organization

Robert Desnick, M.D., Ph.D.
Physician and Researcher

Christine Grube

Brandon Hudgins

Frederick Kaplan, M.D.
Physician and Researcher

Ellie McGinn

Matthew Might, Ph.D.

Beth Nguyen, R.N.
Patient and Advocate

Cynthia Tifft, M.D., Ph.D.
Physician and Researcher

Industry Innovators

Advanced Accelerator Applications USA
NETSPOT®, a diagnostic imaging agent to detect rare neuroendocrine tumors

Spinraza™ for Spinal Muscular Atrophy

CSL Behring
Idelvion® for children and adults with Hemophilia B

Intercept Pharmaceuticals
Ocaliva®for Primary Biliary Cholangitis

Jazz Pharmaceuticals
Defitelio® for Hepatic Veno-Occlusive Disease following Hematopoietic Stem-Cell Transplantation

Sarepta Therapeutics
Exondys 51™ for Duchenne Muscular Dystrophy