- Overview
- Honorees
- Get Involved
- Sponsors
Event Overview
The National Organization for Rare Disorders (NORD) is proud to welcome you to the 2023 Rare Impact Awards and our 40th Anniversary Celebration.
This evening we will be honoring individuals and industry innovators doing remarkable work for the rare disease patient community. Join our host will be Emmy-award winning journalist, Chief White House Correspondent for NBC News and Saturday TODAY co-anchor; Peter Alexander as we recognize the work of six individuals and seven industry innovators for their FDA-approved treatments.
Additionally, this special 40th Anniversary event will include the presentation of a one-of-a-kind Lifetime Achievement Award to NORD founder and rare disease patient advocacy pioneer, Abbey Meyers. Abbey’s unwavering commitment to the rare disease community continues today through each of you.
Thank you for joining us for this special NORD 40th Anniversary and Rare Impact Awards event. Together, we will continue to reimagine a brighter future for patients with rare diseases.
Download the Rare Impact Award Program Book
2023 Rare Impact Award Honorees
Abbey S. Meyers, PhD
Lifetime Achievement Award
Alliance to Cure Cavernous Malformation
Abbey S. Meyers Leadership Award
Ada Hamosh, MD, MPH
Rare Impact Award
Jaime Herrera Beutler
Rare Impact Award
Shannon Killebrew
Rare Impact Award
Phillip Maderia
Rare Impact Award
Bernie Williams
Rare Impact Awards
2023 Industry Innovation Award Honorees
Sanofi for Xenpozyme™
Novartis for Vijoice®
Marinus Pharmaceuticals for Ztalmy®
Mallinckrodt Pharmaceuticals for Terlivaz®
CSL Behring and uniQure for Hemgenix®
bluebird bio for Skysona®
Get Involved
We’re celebrating NORD’s 40th Anniversary this week! Click here to learn about our history and decades of achievements – driven by people just like you – as well as what’s in store for the future of our community and how you can play a role.
Take Action with NORD
We are patients, family members, clinicians, and researchers united by a single purpose – solve the greatest challenges and unmet needs for rare disease patients by improving access to care, advancing research, and driving public policy. Together, we are forging a new way forward to answers, treatments, cures, and lives transformed. Support our mission today. Join our nationwide community of supporters, volunteers, and advocates.
Share your time, passions, and expertise to help people living with rare diseases. Tell your story, raise awareness, build connections in your local area, and lend a hand in support of our mission.
Join our nationwide Join the Rare Action Network® and advocate for federal and state policy initiatives that improve rare health.
Are you passionate about rare diseases and public policy? Are you interested in getting more involved in federal or state policy, or both? Our National and Regional Policy and Advocacy Taskforces provide forums for volunteers to be more deeply involved in grassroots advocacy efforts and to fight for legislative solutions. The Taskforces are open to all, including experienced advocates and new volunteers, and we will offer you all the training and tools you need to be successful!
Start a chapter or club to unite fellow high school and college students to spread awareness and explore career opportunities working in rare disease.
Our charity running program pairs runners with rare community members to raise funds and awareness for those living with rare diseases. Runners can join one of the signature marathons or a run of their choice, and rare patients and or caregivers have the opportunity to partner with runners.
Host a do-it-yourself fundraiser. We will help you turn your passion or special life event into a fundraiser that will change the future of rare diseases.
NORD is hosting a series of in-person and virtual community listening sessions exclusively for Latino/a/x people affected by rare diseases in the United States. We invite you to learn more and spread the word about this important opportunity happening throughout May and early June.
The in-person sessions will take place in New York City, Houston, and the DC Metro Area, with virtual options in each of those locations as well. There is also a national virtual listening session that any Latino/a/x rare patients in the US are welcome to attend.
Sponsors & Supporters
NORD is grateful to our Rare Impact Award sponsors whose support helps to make programs and services for patients and families and our advocacy organization members possible.
Check out our amazing 2023 event sponsors below!
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Additional Supporters
Together, We Are Reimagining A Brighter Future For People with Rare Diseases
Forty years of patient advocacy has taught us that not only is our collective voice powerful, but we know that every person in the rare community has the power to shape the future and make a lasting impact. As NORD continues its mission to improve the lives of millions living with a rare disease, we are asking YOU – our community members, partners and colleagues to help us better understand what would make a difference in your rare journey.
We welcome you to join our community discussion to share what changes you would like to see made to help individuals and families impacted by rare disease. Share your story, successes and help us define what everyday progress means to you.
2024 Sponsors
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