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NORD Announces This Year’s Heroes of Rare Disease: The 2021 Rare Impact Award Honorees

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Today the National Organization for Rare Disorders (NORD®) announced this year’s Rare Impact Award honorees. These outstanding individuals, organizations and industry innovators will be honored for their exceptional work benefiting the rare disease community in a virtual event streaming on June 28, 2021 at 7:00pm ET. The Rare Impact Awards program is part of the Living Rare, Living Stronger NORD Patient and Family Forum, an annual conference that brings patients and families, advocates, health care professionals and other supporters together for learning, sharing and connecting.

“While social-distancing remains necessary, it is vital for us to gather virtually to celebrate the contributions and progress that have been made in the fight against rare diseases. Despite the pandemic and the challenges we have faced, there are still heroes to be found among us from whom we can draw inspiration and motivation to keep moving forward,” said NORD President and CEO Peter L. Saltonstall. “At NORD, we are proud to honor these people, groups and companies for their achievements. We’re humbled to work alongside them and appreciative of their tenacity and commitment to a brighter future for our community.”

This year’s honorees are a strong, inspiring group, each making an impact on the lives of the rare community in a different way. The 2021 program will feature:

  • A Public Health Leadership Award being presented to Peter Marks, MD, PhD, Director, Center for Biologics Evaluation and Research, US Food & Drug Administration
  • The Abbey S. Meyers Leadership Award going to the Desmoid Tumor Research Foundation
  • Rare Impact Awards being bestowed upon patient advocates Jade Day, Daniela DelgadoRobert Long, and Kam Redlawsk; health care professionals and researchers Susan Fernbach, RN, Cathleen Lutz, PhD, MBA, Natasha Shur, MD, and Jason Sicklick, MD, FAS; NORD Rare Action Network Volunteer Ambassadors Danyelle Sun of Wisconsin RAN and Mary Wootten of New York RAN; and legislators The Honorable Hannah Kane, State Representative from Massachusetts, and The Honorable Patty Murray, Senator from Washington.

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™; and Ridgeback Biotherapeutics for Ebanga™.

NORD invites you to join us in June for the virtual Living Rare, Living Stronger Patient and Family Forum featuring the Rare Impact Awards, where the achievements of our 2021 honorees will be celebrated. Registration will open on March 1, with more information available on NORD’s website, rarediseases.org.

About the National Organization for Rare Disorders (NORD®)

The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research and providing patient and family services for those who need them most. Together with over 330 disease-specific member organizations, more than 15,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.

SOURCE National Organization for Rare Disorders (NORD)

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