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.
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