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The 2020 Living Rare Forum has been tentatively rescheduled for July 18-20. As the coronavirus pandemic evolves, NORD will continue to evaluate our plans for the conference to determine our best course of action for the safety and well-being of our community.

2020 Rare Impact Awards

As a part of the 2020 Living Rare Forum, NORD will host its annual Rare Impact Awards at the Rock & Roll Hall of Fame on Sunday, July 19. During the program, NORD will honor individuals and organizations that have truly gone above and beyond to ignite progress and bolster rare disease patients and communities.

The 2020 Rare Impact Awards
Sunday, July 19, 2020
7:00 – 11:00p.m.
Rock & Roll Hall of Fame


2020 Honorees

  • A Lifetime Achievement Award being presented to Janet Woodcock, MD, Director, Center for Drug Evaluation and Research, US Food & Drug Administration
  • The Abbey S. Meyers Leadership Award going to NORD’s Rare Cancer Coalition

Rare Impact Awards being bestowed upon:

  •  Leadership team at the Clinic for Special Children
  • Charlene York, Ohio Rare Action Network Volunteer Ambassador
  • Erica Barnes, Minnesota Rare Action Network Volunteer Ambassador
  • Julia Vitarello, Founder and CEO of Mila’s Miracle Foundation, in partnership with Timothy Yu, MD, Attending Physician, Division of Genetics and Genomics, Boston Children’s Hospital
  • Norman Winnerman, volunteer with the Cornelia de Lange Syndrome Foundation and NORD
  • Patrick James Lynch, Founder and CEO of Believe Limited
  • The Honorable Randi Clites, State Representative from Ohio
  • The Honorable Sherrod Brown, Senator from Ohio
  • Grammy Award-winning guitarist Peter Frampton, patient and advocate with The Myositis Association

2020 Industry Innovation Award honorees include:

  • Alnylam Pharmaceuticals for Givlaari™
  • AveXis for Zolgensma®
  • Daiichi-Sankyo for Turalio™
  • Genentech for Rozlytrek™
  • Global Blood Therapeutics for Oxbryta™
  • Vertex Pharmaceuticals for Trikafta™

2019 Rare Impact Awards
Read more about the 2019 Rare Impact Awards here.