“Rare Diseases Threatens 70 Million Indian Lives” | Morulaa

Almost 70 million Indian citizens are facing rare diseases that are “life threatening” found in a clinical research. Indian Society for Clinical Research (ISCR) says that there is about 7,000 known rare diseases currently in which most of it are gradually developing, life Threatening and chronically hindering conditions. For more than 90 per cent of these diseases, there is no treatment and the people with the rare disease keep on growing each year. The huge majority of the rare diseases are genetically carried over and exists over the lifetime of a patient. Approximately, 50 percent of them who are affected by the rare diseases seem to be children’s, of whom will not live to celebrate their fifth birthday are about 30 percent.

The ISCR says “to diagnose a rare disease it takes around seven years”. The sad part is that “the statistics estimates that there are at least 70 million patients living with a rare disease, in which most of them cannot afford to get treated for their rare disease and remaining people don’t even know that they have a rare disease” The last day of February month is observed as “Rare Disease Day”. The bitter truth is that the rare disease occurrence is not rare anymore. Supporting the treatments there is tremendous improvement in science and medicine, adding to that there is not much invested in India for understanding the rare diseases and their management. Recently there are more of supporting factors from the government like “Come Make in India” which could results in the investments made to medical sectors soon.

“We need a much effort to promote clinical research in India to find newer, affordable and effective therapies for the 70+ million patients in India who are diagnosed with a rare disease and should be provided with an equal right to benefit from new medicines and treatment,” says ISCR’s President Suneela Thatte. The documents required for the clinical trials submission in India will be a good factor to look on clinical trial application. Prasanna Shirol, Founder Member, Organisation for Rare Disease India (ORDI) says that accessibility, awareness and affordability are necessities of patients suffering from rare disease and diagnosing it at its early stage is a critical challenge in the management of rare diseases. To know about Indian health care – Indian Healthcare Market: An Overview

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