Welcome to the Rare Impact Awards®


Awards Honorees

Industry Honorees

Event Overview


Use #RareImpact to join the celebration online with attendees in-person and around the world!

Welcome to the 2022 Rare Impact Awards®

The Rare Impact Awards are an annual celebration of the rock stars of the rare community and proof that through dedication and collaboration, it is possible to make progress towards a brighter future for all.

This year, we are proud to welcome back the Rare Impact Award honorees from 2020 and 2021, who deserve the in-person recognition of our community, as all the honorees before them have had. To learn more about our 2020 and 2021 honorees, please visit: https://riadev.wpengine.com/rare-impact-awards/.

Download the Program Book


Marshall Summar, MD

Lifetime Achievement Award

Sickle Cell Disease Association of America, Inc

Abbey S Meyers Leadership Award

Peter Hotez, MD, PhD

Public Health Leadership Award

Maria Elena Bottazzi, PhD

Public Health Leadership Award

Congressman G. K. Butterfield (D) North Carolina

Rare Impact Award

Delegate Kathleen Murphy (D) Virginia 34th District

Rare Impact Award

Lesley Bennett

Rare Impact Award

Bo Bigelow

Rare Impact Award

Melinda Burnworth, PharmD, BCPS

Rare Impact Award

Richard Horgan

Rare Impact Award

Tammy Jones

Rare Impact Award

Jack Timperley

Rare Impact Award

Kids Caring for Kids Youth Advisory Board

Rare Impact Award

Michail Lionakis, MD ScD

Rare Impact Award

Nora Wong, PhD

Rare Impact Award


Apellis for Empaveli™

BridgeBio Pharma for Nulibry™

Bristol Myers Squibb & 2seventy bio for Abecma®

Enzyvant for Rethymic®

Kedrion Biopharma for Ryplazim®

On Target Laboratories Inc. for Cytalux™

PharmaEssentia Corporation for Besremi®

Get Involved

Join the conversation, connect with other attendees, and let your friends know you’re tuning in! Use the hashtag #LivingRareForum on social media and tag NORD on social media so we can reshare your posts.

Your Donation Matters

There are 7,000 rare diseases affecting 25-30 million Americans, and 90% do not have an FDA approved treatment. NORD is leading the fight to improve the lives of people impacted by rare diseases. We do this by supporting patients and organizations, accelerating research, providing education, disseminating information, raising awareness, and driving public policy. Support NORD with a tax-deductible donation today. If you have any questions about your donation, please contact us at (617) 249-7300 or at [email protected].

Donate Online - Or Click here to donate by mail.

The National Organization for Rare Disorders Attn: Department 5930 P.O. Box 4110 Woburn, MA 01888Please include your credit card information or your check/money order made out to: The National Organization for Rare Disorders. NORD is pleased to accept bequests, planned gifts, gifts of stock, monthly donations and tribute/memorial donations. To learn more about these giving options, please contact us at (617) 249-7300 or at [email protected] If you are interested in donating to a research fund, please click here.

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