WASHINGTON – 01/24/2019 (PRDistribution.com)
Rare disease research needs global support. So, too, do the events planned for Rare Disease Day, 2019.
On Sunday, the 24th February, 2019, the Organization for Rare Diseases India in USA(ORDIUSA) and the Organization for rare diseases India (ORDI) are holding Racefor7 in the U.S. for the third year in a row. The 7-kilometer walk/run was established to raise awareness of the over 7,000 medical conditions collectively known as “rare diseases.”
A rare disease, as defined by the World Health Organization, occurs in fewer than 6.5 to 10 people per 10,000. This translates to more than 350 million people worldwide who suffer from rare diseases and their co-morbid conditions. Because of the rarity of these diseases among the general populace, patients on average take 7 years to find a diagnosis and orphan drugs have a 7-year market exclusivity, an incentive provided by the US Orphan Drug Act of 1983. This is the origin of the name Racefor7: 7,000+ conditions, average 7 years to diagnosis, 7-year drug exclusivity and hence 7 Km.
The walk/run will occur at eleven cities in India this year and four cities in the U.S. including Washington, Dallas, Greenville, S.C., and San Francisco (Fremont, Calif.). Dallas and Fremont are new locations for the run this year. Racefor7 will be part of events happening worldwide the week of February 24-28, including Rare Disease Week on Capitol Hill in Washington, separately organized by the Rare Disease Legislative Advocates and supported by EveryLife Foundation.
“I am really excited to wave the flag to start this year’s Racefor7. What a great event and what a way to bring the rare disease communities of the U.S. and India together,” says Marshall L. Summar, MD, Director of Rare Disease Institute, Children’s National Medical Center at Washington DC and Chairman of the board of directors at the National Organization for Rare Disorders (NORD).
Last year, the Washington race starter was Dr. William Gahl, Clinical Director of the National Human Genome Research Institute (NHGRI/NIH) and Director of the NIH Undiagnosed Diseases Program.
Serial entrepreneur, angel investor and philanthropist, BV Jagadeesh, will start the race for the San Francisco Bay Area location. “It’s very rare to see an organization or group of people paying attention to rare diseases, something all us tend to ignore. When you realize there are roughly 350 million people suffering from one of more than 7,000 rare diseases, it’s time awareness is created and also help save lives from these diseases. I am proud to be associated with ORDIUSA and thrilled to be part of the race at Fremont,” says Jagadeesh.
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