Nonprofit Group Works to Raise Rare Disease Awareness in India

Nonprofit Group Works to Raise Rare Disease Awareness in India
With an estimated 1.37 billion inhabitants, India will likely surpass China in five years as the world’s most populous country. That also means it will have more rare-disease patients than any nation. It already has more than twice as many as the 28-member European Union. Harsha K. Rajasimha, a genomics data scientist from Bangalore, is founder and director of the newly established Organization for Rare Diseases India (ORDI). “We are a national umbrella organization representing the collective voice of over 70 million people with rare diseases in India,” Rajasimha said in a recent interview. “Our mission is to build collaborative bridges between the U.S. and India, and to connect them with patient advocacy groups, with research or clinical trials in the U.S., and with international consortia.” Rajasimha was a speaker at the 2019 World Orphan Drug Congress USA, which took place April 10-12 at National Harbor in Oxon Hill, Maryland. “There are multiple challenges, starting with lack of public awareness about rare diseases,” he said. “In second place is getting faster diagnosis of rare disease. Treatment comes at the very end, because 95% of rare diseases do not have any treatment. However, some are metabolic disorders that can be treated with diets and supplements.” ORDI, which represents 25 to 30 patient groups in India, is also registered in the United States as a 501(c)(3) charity called ORDI USA. The charity was formed by Rajasimha and Prasanna Shirol, the father of a child with Pompe disease. ORDI USA is a member of the Connecticut-based National Organi
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