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On Friday, February 26, Uplifting Athletes, along with Shire, the National Organization for Rare Diseases (NORD) and the Children’s Rare Disease Network, traveled to Capitol Hill for an advocacy day in honor of Global Rare Disease Day.

A group of leaders from each organization met with members of Congress and their staff to educate them on the impact of rare diseases, the need for increased attention, research and funding, along with the importance of infant screening for these diseases.

Congress members and their staff also heard the story of Jeff Bardsley, a rare disease patient in attendance living with Hunter Syndrome.

The group of advocates then spent time distributing pins and wristbands to help raise awareness of the rare disease cause.

Moving forward Uplifting Athletes looks to build relationships with these and other advocacy groups in an effort to raise rare diseases to a national priority, giving a united voice to the rare disease community. For more information on all of Uplifting Athlete's Rare Disease Day events visit our Rare Disease Day page.