2022 Rare Impact Awards®

NORD will present the Rare Impact Awards on Sunday June 27, 2022. We look forward to celebrating the individuals, groups and companies making extraordinary strides on behalf of the millions of Americans impacted by rare disease. Please check back often for updates on this year’s program.

For sponsorship inquiries contact [email protected]


Want to nominate your rare hero?

Complete the Nomination Form

View Legal Disclosures

Highlights from the 2021 Rare Impact Awards®

Watch the complete 2021 program ON demand

Download the 2021 Rare Impact Awards Program Book

Congratulations to our 2021 honorees

MD, PhD
Director, CBER, FDA

Peter Marks

Public Health Leadership Award


Desmoid Tumor Research Foundation

Desmoid Tumor Research Foundation

Abbey S Meyers Leadership Award

MD
Chief Executive Officer, Partner, Flagship Pioneering

Christopher Austin

Special Recognition


Vice President, A Twist of Fate- Arterial Tortuosity Syndrome

Jade Day

Rare Impact Award


Founder, Daniela’s Little Wish, Advocate

Daniela Delgado

Rare Impact Award

RN
Co-Director, Office of Community Engagement and Diversity, Baylor College of Medicine

Susan Fernbach

Rare Impact Award


Executive Director, Uplifting Athletes

Robert Long

Rare Impact Award

PhD, MBA
Senior Director, In Vivo Pharmacolgy; Rare and Orphan Disease Center

Cathleen Lutz

Rare Impact Award


Industrial Designer, Writer, Illustrator and Advocate

Kam Redlawsk

Rare Impact Award

MD
Medical Geneticist, Rare Disease Institute. Associate Professor, George Washington University

Natasha Shur

Rare Impact Award

MD FACS
Professor of Surgery | UC San Diego School of Medicine, Executive Vice Chair of Research | Department of Surgery; Co-Leader, Sarcoma Disease Team | Moores Cancer Center

Jason Sicklick

Rare Impact Award


United States Senator, Washington

The Honorable Senator Patty Murray

Rare Impact Award


State Representative From Massachusetts

The Honorable Hannah Kane R- MA

Rare Impact Award


New York Rare Action Network Volunteer Ambassador

Mary Wootten

Rare Impact Award


Wisconsin Rare Action Network Volunteer Ambassador

Danyelle Sun

Rare Impact Award

2021 Industry Innovation Award Honorees

for OXLUMO™

for Koselugo™

for AYVAKIT™

for Zokinvy™

for TEPEZZA®

for PEMAZYRE®

for Retevmo®

for INMAZEB™

for Ebanga™