Rare Impact Awards® Nominations

The nomination window is now closed. We look forward to celebrating all of rare heroes a the Rare Impact awards on June, 8 2024!

Honoree Categories

Click the category names below to learn more about the requirements for each honoree category

Description: Recognizes federal and state policymakers who have advanced policies or regulations that improve the lives of rare disease patients in the United States.
Qualifications: Nominees must meet the following requirements:
  • They must be a US state or federal lawmaker or government employee.
  • The policies or regulations they are being nominated for must be in the US.

Description: Recognizes patient advocates who, individually or as part of a group, have made a meaningful impact in helping to advance NORD’s mission to improve the lives of people living with rare diseases.
  • Individual efforts have made a positive impact on the greater rare disease community, including but not limited to:
    • Improving access to care
    • Accelerating research or therapeutic development
    • Addressing health equity
    • Advancing policies or regulations
  • Individuals must uphold NORD’s values of compassion, inclusion, integrity, collaboration, and innovation.

Description: Recognizes young people who have made an outstanding contribution by volunteering their time and efforts to raise awareness of rare diseases. These rising stars are inspiring ambassadors who demonstrate a passion for NORD’s mission to improve the health and well-being of rare disease patients.
  • Individuals must be under the age of 18 at the time of submission.
  • Those individuals under 18 must have approval from their parent or guardian to accept the award.

Description: This award recognizes individuals making significant contributions to the rare disease community through clinical care or research. Nominees demonstrate strong leadership in patient-centricity through their engagement with patients, caregivers, and patient organizations in their research and care practices.
Contributions may include the following:
  • Substantial collaboration and engagement with patients and families
  • Active participation on patient advocacy organization boards, committees, or events
  • Mentorship of emerging scientists or clinicians

Description: Honors a NORD patient organization member that has made significant contributions to the rare disease community through strong leadership in advocacy, education, research, patient support services, or raising awareness.
Nominations must be able to demonstrate one or more of the following:
  • Organizational growth and expansion
  • Innovation or high-impact programs and services
  • Major research, regulatory or legislative achievements
  • Advancements in patient or medical education and care
  • Leadership in diversity, equity and inclusion


Abbey S. Meyers, PhD

Lifetime Achievement Award

Alliance to Cure Cavernous Malformation

Abbey S. Meyers Leadership Award

Ada Hamosh, MD, MPH, FACMG

Rare Impact Award

Jaime Herrera Beutler

Rare Impact Award

Shannon Killebrew

Rare Impact Award

Phillip Maderia

Rare Impact Award

Bernie Williams

Rare Impact Award


bluebird bio for Skysona®

CSL Behring and uniQure for Hemgenix®

Mallinckrodt Pharmaceuticals for Terlivaz®

Marinus Pharmaceuticals for Ztalmy®

Novartis for Vijoice®

Sanofi for Xenpozyme™