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NORD Honors Rare Disease Advocates and Innovators

May 15, 2012 - NORD honored members of Congress, patient advocates, medical researchers, and companies that have brought new therapies to market.

Celebration Highlights Progress in Advocacy, Awareness, Research and New Treatments

View images from the event

The National Organization for Rare Disorders (NORD) honored members of the U.S. Congress, patient advocates, medical researchers, and companies that have brought new therapies to market on Tuesday, May 15, at Union Station in Washington, DC.

This took place at NORD's annual "Partners in Progress Celebration", an event that focuses on the ways in which stakeholders in the rare disease community work together toward their shared goal of improving the lives of patients.

"This is NORD's opportunity to celebrate excellence and to say thank you on behalf of the patient community to those who have advanced the cause during the previous year," said Peter L. Saltonstall, NORD president and CEO.   "We look forward to this event each year, and we truly appreciate the accomplishments it honors."

Actress Patricia Richardson of TV's Home Improvement, Strong Medicine and The West Wing emceed the event.  All members of the rare disease community were invited. View the 2012 Celebration Journal.

The 2012 Partners in Progress Honorees were:


These awards honor leadership in public policy to improve the lives of patients and families affected by rare diseases.

  • The Honorable Kay Hagan, U.S. Senator (NC)
  • The Honorable Clifford Stearns, U.S. Representative (FL-6)
  • The Honorable Edolphus (Ed) Towns, U.S. Representative (NY-10)


This award honors individuals and/or organizations for initiatives undertaken voluntarily on behalf of the rare disease patient community.

  • Blair Van Brunt of the Shwachman-Diamond Syndrome Foundation and the Massachusetts Biotechnology Council


Established in honor of NORD's founding president, this award honors a NORD Member Organization for strong and effective leadership on behalf of its members.

  • Pulmonary Hypertension Association


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

  • Alexion Pharmaceuticals, Inc., for Soliris to treat patients with atypical Hemolytic Uremic Syndrome (aHUS)
  • Amgen, Inc., for Sensipar for patients with primary, severe parathyroidism who are unable to undergo surgical resection
  • Genentech, Inc./Biogen Idec, for Rituxan to treat, in combination with glucocorticoids, patients with Wegener's granulomatosis and microscopic polyangiitis
  • Pfizer, Inc., for Xalkori, approved with a companion diagnostic test to treat certain patients with late-stage, non-small cell lung cancers who express the abnormal ALK gene
  • Rare Disease Therapeutics, Inc., for Anascorp for treatment of patients for scorpion stings


This award honors patient/researcher partnerships driving progress through collaboration.

  • NIH Coalition of Patient Advocacy Groups (CPAG) and Rare Diseases Clinical Research Network (RDCRN)
  • Cystic Fibrosis Foundation and Vertex Pharmaceuticals, Inc.

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