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  1. FDA's Rare Disease Day

Rare Disease Day 2017

The FDA Rare Disease Council is honored to commemorate Rare Disease Day 2017 on February 28th. The 2017 theme spotlights the critical importance of Research - Research Brings Hope to People Living with a RareRDD 2017 Poster Image Disease - which recognizes the various types of research working together to help change people with rare diseases and the lives of their families and caregivers.

In recognition of Rare Disease Day, let’s celebrate the limitless possibilities that research brings to rare disease patients and their families.

FDA's Office of Orphan Products Development (OOPD) and CDER Rare Disease Program will join NIH/NCATS’s Rare Disease Day recognition event held at Masur Auditorium, Clinical Center (Bldg 10) on Monday, February 27, 8:30 am – 4:00 pm.  Registration for this event is free but requested. If you are unable to join in person, the Rare Disease Day 2017 event will also be webcast.  For more information and registration for this event – https://ncats.nih.gov/rdd

In collaboration with Rare Disease United Foundationdisclaimer icon, pieces from the Beyond the Diagnosis Art Exhibit disclaimer iconis on display at FDA, NIH and other locations.  Artist from around the world have donated their time and talents to paint rare disease patients for this groundbreaking Exhibit. This beautiful Exhibit has traveled to research institutes, medical schools and hospitals around the globe encouraging the medical community to look "beyond the diagnosis" to the patient.

OOPD also participated with NIH in a Rare Disease Day Twitter Chat on Tuesday, February 21, 2017, 1:00 pm – 2:00 pm. The chat featured NIH Director Francis S. Collins, M.D., Ph.D., NCATS Director Christopher P. Austin, M.D., NCATS Office of Rare Diseases Research Director Petra Kaufmann, M.D., M.Sc., Gayatri R. Rao, J.D., M.D. Director, FDA/OOPD, and numerous patient advocacy organizations.

Rare Disease Day, which is commemorated internationally on the last day in February, was established to raise awareness about rare diseases, the challenges encountered by those affected, the importance of research to develop diagnostics and treatments, and the impact of these diseases on patients’ lives. For information about international Rare Disease Day – disclaimer iconwww.rarediseaseday.org

OOPD’s mission is to promote the development of products for rare diseases. For more information on OOPD programs, Click Here.  

FDA’s Rare Disease Council facilitates cross-Agency communication, collaboration and coordination of rare disease issues.

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