NORD to honor NIH Director and others at Portraits of Courage Celebration



NORD will present a Lifetime Achievement Award to National Institutes of Health (NIH) Director Francis Collins, MD, PhD, at its annual Portraits of Courage Celebration on Tuesday, May 19, in Washington DC. Dr. Collins led the successful Human Genome Project and also served for several years as Director of the National Human Genome Research Institute before being named NIH Director in 2009.

Before joining NIH, he served on the faculty of the University of Michigan. Dr. Collins played an instrumental role in the identification of genes for several rare diseases, including cystic fibrosis, Huntington’s disease, neurofibromatosis, and Hutchison-Gilford progeria syndrome.

Others to be honored at the NORD celebration include Senator Lamar Alexander (TN) and Senator Robert Casey (PA), for their support of rare disease research.

This annual NORD event is open to all and is attended by a broad cross section of stakeholders in the rare disease community, including clinicians and researchers, staff of NIH and FDA, patient organization leaders, and those involved in developing treatments for rare diseases.

Ten rare disease patients and caregivers will be recognized as representatives of the courageous spirit of individuals and families living with complex, life-altering rare diseases. For additional information or to register, visit the NORD website (

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