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Last updated on April 18, 2014 at 1:21 EDT

NORD To Honor Rare Disease Heroes At 30th Anniversary Celebration

April 5, 2013

Momentous Event to Highlight Historic Past, Promising Future

WASHINGTON, April 5, 2013 /PRNewswire-USNewswire/ — Honoring heroes of the past and innovators of the future, the National Organization for Rare Disorders (NORD) will host a 30(th) Anniversary Celebration for the entire rare disease community on Tuesday, May 14 at the Mellon Auditorium in Washington, DC.  This momentous occasion will provide an exciting opportunity to celebrate the history and lasting impact of both the Orphan Drug Act and NORD.

“Since 1983, the rare disease community, with NORD as a unifying force, has built a solid foundation of accomplishment,” said NORD President and CEO Peter L. Saltonstall.  “We look forward to honoring heroes from all sectors of the community.  And we also anticipate an evening that will inspire future innovation as we hear first-hand from patients and families living with rare diseases.”

The Orphan Drug Act of 1983 launched a new era in the development of therapies for people with rare diseases.  Established by patient advocates at the time the law was enacted, NORD has been at the heart of rare disease activity over the years, working with partners in patient organizations, government and industry to bring meaningful advancements for patients.

Honorees for the NORD 30(th) Anniversary Celebration will be:

For Leadership in Public Policy

These awards honor public officials for leadership that has improved the lives of millions of Americans living with rare diseases.

  • William Corr, Deputy Secretary, U.S. Department of Health and Human Services
  • The Honorable Nancy Kassebaum, U.S. Senate, retired
  • The Honorable Henry Waxman, U.S. House of Representatives

For Vision and Pioneering Guidance

These awards honor pioneers in the patient community, government and industry for years of service to rare disease patients and their families.

  • Stephen C. Groft, PharmD
  • Marlene Haffner, MD, MPH
  • Lars Uno Larsson
  • Abbey S. Meyers
  • Jess G. Thoene, MD

For Innovative Orphan Products Approved in 2012

These awards honor companies that brought important and innovative treatments to market during the previous year.

  • Aegerion Pharmaceuticals, Inc.
  • NPS Pharmaceuticals, Inc.
  • Onyx Pharmaceuticals, Inc.
  • Sigma-Tau Pharmaceuticals, Inc.

REGISTRATION AND SPONSORSHIP

Registration and sponsorship information is available on the NORD website (www.rarediseases.org).   

SOURCE National Organization for Rare Disorders (NORD)


Source: PR Newswire