Rare Disease Report

ORDI Rare Disease Day Campaign Off and Running with Race for 7

JANUARY 30, 2018
RDR Staff
In honor of Rare Disease Day (Feb. 28), Organization for Rare Disease India (ORDI) will be running wild.

In an effort to increase public knowledge about the rare disease community, empower those within it, and address unmet medical needs around the world, ORDI is organizing the Race for 7; an awareness run to highlight the challenges of being a rare disease patient or family member.

The Race for 7 will be taking place simultaneously at 3 different locations on Sunday, February 25, including: St. Joseph’s Indian High School in Bengaluru, Mumbai, and at Washington Monument National Park in Washington D.C. ORDI hopes to register 7,000 runners across the 3 locations, each of whom will run for 7 miles. The symbolic number “7,” of course, represents the estimated 7,000 rare diseases around the world.

ORDI was founded in 2014 by Dr Harsha Karur Rajasimha and his team, who stress the importance of participation in awareness events promoting the rare disease community: “The event is open to the public and diverse individuals – including patients with rare diseases – are encouraged to register at racefor7.com,” Dr Rajasimha said.

Rare diseases affect 1 out of every 20 Indians and, among these, 50% are children. Most rare disease patients in India die before their 5th birthday due to a lack of timely diagnosis and appropriate medical intervention.

Rare Disease Day was established in 2008 and was officially recognized in the United States for the first time in 2009. Since its initial observation, more than 94 countries have participated.

Additionally, for the second year in a row, ORDI will also be exhibiting at the National Institutes of Health Rare Disease Day event on March 1. For collaboration and partnership opportunities, contact the Racefor7USA team at usa[@]ordindia[.]org.

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