2016 Rare Disease Day at NIH Photos

The 2016 Rare Disease Day at NIH was held on one of the rarest of days ― February 29 ― in order to raise awareness about these diseases, the people they affect, and research collaborations to address rare diseases challenges. With a slogan of “Patients & Researchers — Partners for Life,” the event brought together hundreds of rare disease patients, advocates, caregivers and researchers to discuss the latest in rare disease research advances.

Sponsored by NCATS and the NIH Clinical Center, the event featured powerful presentations, remarks by congressional and NIH leadership, posters and exhibits, tours of the Clinical Center and more. Event partners included the Food and Drug Administration (FDA) Office of Orphan Products Development and the FDA Center for Drug Evaluation and Research’s Rare Diseases Program, the National Organization for Rare Disorders, Genetic Alliance, Global Genes, the EveryLife Foundation for Rare Diseases, and Uplifting Athletes. View some of the photos from the 2016 Rare Disease Day at NIH:

Petra Kaufmann at 2016 Rare Disease Day at NIH

Petra Kaufmann, M.D., M.Sc., director of NCATS’ Office of Rare Diseases Research and Division of Clinical Innovation, speaks at the 2016 Rare Disease Day at NIH. (Daniel Soñé Photography)

Attendees at 2016 Rare Disease Day at NIH

Attendees collect information from the NCATS Office of Rare Diseases Research exhibit booth. (Daniel Soñé Photography)

Attendees discuss the importance of rare diseases research. (Daniel Soñé Photography)

Exhibitors at 2016 Rare Disease Day at NIH

Exhibitors share rare diseases resources with participants. (Daniel Soñé Photography)

Beatrice Bowie at 2016 Rare Disease Day at NIH

Beatrice Bowie, a sickle cell support group facilitator with Adventist Healthcare and an NIH Clinical Center Patient Advisory Group board member, shares what it is like to live with sickle cell disease. (Daniel Soñé Photography)

Dianna Campbell at 2016 Rare Disease Day at NIH

Dianna Campbell, a rare disease patient, is one of many participants who poses questions to speakers. (Daniel Soñé Photography)

Patricia Weltin and John Gallin speak to each other at the 2016 Rare Disease Day at NIH

Patricia Weltin of the Rare Disease United Foundation speaks with NIH Clinical Center Director John I. Gallin, M.D. (Daniel Soñé Photography)

Poster presenters discuss research at 2016 Rare Disease Day at NIH

Poster presenters discuss research advances with participants during the event. (Daniel Soñé Photography)

Sharon Terry at 2016 Rare Disease Day at NIH

Sharon Terry, M.A., president and CEO of Genetic Alliance, discusses the importance of patient advocacy. (Daniel Soñé Photography)

Abbott family at 2016 Rare Disease Day at NIH

The Abbott family, whose son, Aidan, has ectodermal dysplasia, stands in front of a painting of him that is part of the “Beyond the Diagnosis Art Exhibit,” an effort led by the Rare Disease United Foundation. (NCATS photo)

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