NORD announces 2021 Rare Impact Award honorees

By The Science Advisory Board staff writers

The National Organization for Rare Disorders (NORD) announced the honorees for the 2021 Rare Impact Awards.

The honorees will be recognized at a virtual event on June 28. Part of the Living Rare, Living Stronger NORD Patient and Family Forum, the award is given to those making strides to improve the lives of patients and families affected by rare diseases.

Rare Impact Awards will be presented to the following patient advocates:

  • Jade Day
  • Daniela Delgado
  • Robert Long
  • Kam Redlawsk

Rare Impact Awards will be presented to the following healthcare providers:

  • Susan Fernbach, RN,
  • Cathleen Lutz, PhD, MBA
  • Dr. Natasha Shur
  • Dr. Jason Sicklick

Rare Impact Awards will be presented to the following NORD Rare Action Network volunteer ambassadors:

  • Danyelle Sun
  • Mary Wootten
  • Massachusetts State Rep. Hannah Kane
  • U.S. Sen. Patty Murray (D-CA)

Dr. Peter Marks, the director of the Center for Biologics Evaluation and Research at the U.S. Food and Drug Administration will be presented with a Public Health Leadership Award. The Desmoid Tumor Research Foundation will receive the Abbey S. Meyers Leadership Award.

2021 Industry Innovation Award honorees include:

  • Alnylam Pharmaceuticals for Oxlumo
  • AstraZeneca for Koselugo
  • Blueprint Medicines for Ayvakit
  • Eiger Biopharmaceuticals for Zokinvy
  • Horizon Therapeutics for Tepezza
  • Incyte for Pemazyre
  • Loxo Oncology and Eli Lilly for Retevmo
  • Regeneron for Inmazeb
  • Ridgeback Biotherapeutics for Ebanga

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