WASHINGTON, April 4, 2014 /PRNewswire-USNewswire/ -- 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
- The MPN Research Foundation (www.mpnresearchfoundation.org)
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 for Kynamro for homozygous familial hypercholesterolemia
- GlaxoSmithKline PLC for Mekinist for metastatic melanoma
- Pharmacyclics Inc. 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 (www.rarediseases.org).
Established in 1983 by rare disease patient organization leaders, NORD represents the nearly 30 million Americans affected by rare diseases, their families, and the patient organizations that serve them. It provides programs of advocacy, education, research and patient/family services to improve the lives of all people living with rare diseases. Learn more about NORD at www.rarediseases.org.
SOURCE National Organization for Rare Disorders (NORD)