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National Organization for Rare Disorders to Honor Two Members of Congress, Patient Advocates and Orphan Product Innovators

April 1, 2014 - NORD to Present Awards at “Portraits of Courage” Celebration on May 8th in Washington, DC.

NORD to Present Awards at “Portraits of Courage” Celebration on May 8th in Washington DC

Washington DC, April 1, 2014----Rare disease patient advocates, two members of Congress and companies that have brought novel new therapies to patients will be honored at the “Portraits of Courage Celebration” of the National Organization for Rare Disorders (NORD) on Thursday, May 8, at the National Building Museum in Washington DC.

“We’ll be highlighting the stories of patients and families who live with rare diseases and demonstrate great courage in the face of enormous challenges,” said NORD President and CEO Peter L. Saltonstall. “We look forward to honoring those who have driven major advances in public policy and scientific achievement over the past year while also celebrating the spirit of the rare disease community.”

NORD’s celebration of progress is an annual event open to everyone with an interest in rare diseases and orphan products. Approximately 500 people attend each year, representing a cross-section of the rare disease community – medical clinicians and researchers, patients and patient advocates, and individuals from government, academia and the pharmaceutical industry.

This year, NORD will honor Senator Sherrod Brown of Ohio and Representative Fred Upton of Michigan for their ongoing support of rare disease research and, in particular, their support for the National Pediatric Research Network Act of 2013, which authorizes the National Institutes of Health (NIH) to establish a network of pediatric research consortia to study devastating diseases of childhood.

In addition, NORD will honor one of its member organizations – the MPN Research Foundation – with an award established in honor of NORD’s president emeritus, Abbey S. Meyers, retired.

A Lifetime Achievement Award will be presented to John Walsh, the founder, president and CEO of the Alpha-1 Foundation representing those affected by alpha-1 antitrypsin deficiency.

NORD will also present awards to six companies that developed innovative new therapies for people with rare diseases that were approved by the U.S. Food and Drug Administration during 2013.

The awards and recipients are as follows:

National Health Leadership Awards

  • The Honorable Sherrod Brown (OH), U.S. Senate
  • The Honorable Fred Upton (MI), U.S. House of Representatives

Abbey S. Meyers Leadership Award

Lifetime Achievement Award

  • John Walsh – Co-founder, President and CEO of the Alpha-1 Foundation

Partners in Progress Corporate Awards for Products Approved in 2013

  • Actelion Pharmaceuticals for Opsumit for pulmonary arterial hypertension
  • Bayer HealthCare for Adempas for pulmonary arterial hypertension
  • Genentech Inc. for Gazyva for chronic lymphocytic leukemia
  • Genzyme, a Sanofi company, and Isis Pharmaceuticals Inc. for Kynamro for homozygous familial hypercholesterolemia
  • GlaxoSmithKline PLC for Mekinist for metastatic melanoma and Tafinlar for metastatic melanoma
  • Pharmacyclics Inc. and Janssen Biotech for Imbruvica for mantle cell lymphoma

NORD’s Portraits of Courage Celebration is open to everyone with an interest in rare diseases and orphan products. Additional information is available on the NORD website.

 
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