The United States and India are joining forces to engage the rare disease community in honoring International Rare Disease Day and the millions of patients around the world.
On Sunday, February 25, the Organization for Rare Diseases India (ORDI) is sponsoring the Race for 7, a 7-kilometer walk or run that symbolizes the 7,000 known rare diseases affecting 350 million patients worldwide. Two events will be held in Bengaluru, Mumbai, and Washington D.C. to promote global clinical research.
ORDI hopes to reach its goal of 7,000 participants at both races to represent the 7,000 rare diseases.
Approximately 30 million Americans and 70 million Indians are diagnosed with a rare disease
. While a large community is affected by rare diseases in India, there is no centralized health policy that assists these patients in seeking and paying for treatment.
"Most individuals with a rare disease have spent considerable time undiagnosed," said William A. Gahl, M.D., Ph.D., Clinical Director of the National Human Genome Research Institute (NHGRI), in a press release
. "When they finally achieve a diagnosis they often enter a small community of advocates who nurture them, even if there is no cure. International Rare Disease Day is a time when people all over the earth can celebrate together the unique virtues we have in common as humans: compassion, understanding, empathy, and an indomitable spirit."
The event in D.C. begins at 9:45 AM EST at the Sylvan Theater, Washington Monument, with the walk/race beginning at 10:00 AM EST. Special guests at the event include Dr. Gahl and Cynthia Tifft, M.D., Ph.D., Deputy Clinical Director of NHGRI.
Gahl and Tifft run a program called the Undiagnosed Diseases Network
, a National Institutes of Health site that encompasses NHGRI’s mission to serve patients with rare diseases internationally.
"We are thrilled to have long-time champions of rare diseases research flagging the Racefor7 this year. The community will be enriched and energized by participating in this event. We look forward to fostering collaborations with international stakeholders including patient groups, UDN, International Conference on Rare Diseases and Orphan Drugs and International Rare Diseases Research Consortium," said Harsha Rajasimha, M.S., Ph.D
., Founder and Director of ORDI, who co-directs the Rare Diseases Systems Biology Research Initiative, along with Professor Ancha Baranova, at George Mason University, Fairfax, VA.
All individuals and groups are encouraged to participate. Registration for the D.C. race can be found at www.racefor7usa.com
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