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Feb. 11, 2020

TOPIC: Press Releases, Featured News, Events

NORD Introduces This Year’s Rare Disease-Fighting Super Group: The 2020 Rare Impact Award Honorees!

Posted by Valaree DonFrancesco

Washington, DC, February 11, 2020—The National Organization for Rare Disorders (NORD®) has announced this year’s roster of rare disease change-makers, the 2020 Rare Impact Award honorees. These exceptional individuals, organizations and industry innovators will be honored for their outstanding work for the rare disease community on May 15, 2020, in Cleveland, Ohio. The 2020 Rare Impact Awards program will take place at the Rock and Roll Hall of Fame, an iconic venue and top visitor destination in Cleveland.

“We live at a time of unprecedented advances in medical care for patients with rare diseases, and this year’s honorees are being recognized for their unique and innovative contributions,” said Peter L. Saltonstall, President and CEO of NORD. “We are incredibly grateful for the dedication of those who are making progress a reality through their extraordinary work. At NORD, we are proud to honor these special people, groups and companies with Rare Impact Awards for their achievements, and this year are thrilled to do so in a setting truly befitting their superstar status.”

This year’s honorees are as diverse, unique and rocking as the rare community itself. The 2020 program will feature:

  • 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 the 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; and 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™; and Vertex Pharmaceuticals for Trikafta™.

An annual event, the Rare Impact Awards program is hosted by NORD, the leading independent advocacy organization dedicated to improving the lives of patients and families impacted by rare diseases. It is part of the Living Rare, Living Stronger NORD Patient and Family Forum, a conference held in a different location each year that brings the rare community together with health care professionals, medical students and advocates for learning, sharing and connecting.

The Rare Impact Awards are presented with support from Agios Pharmaceuticals; Alnylam Pharmaceuticals; Amgen; BioMarin Pharmaceutical; bluebird bio; Genentech; GlaxoSmithKline; Horizon Therapeutics; Incyte Corporation; Principia Biopharma; and Vertex Pharmaceuticals.