The Indian Society of Clinical Research (ISCR) and the Organisation for Rare Diseases India (ORDI) are alarmed about the lack of treatment option for 70 million rare disease patients in the country and are keen to intensify clinical research. This would not just drive drug development but provide access to expensive drugs that under research to patients of rare diseases.
On the occasion of the Rare Disease Day observed annually on February 28, ISCR and ORDI teamed up to highlight on this year theme Living with a Rare Disease. The two are concerned over the millions of caregivers, friends and relatives of patients whose daily lives are impacted and are living day-by-day, hand-in-hand with rare disease patients.
According to the EveryLife Foundation for Rare Diseases, 95 per cent of rare diseases lack a single FDA approved treatment.
“We need to create a strong ecosystem for rare diseases in India, including a patient registry and a supportive national policy and regulatory environment. Patients suffering from rare diseases have an equal right to benefit from new medicines and treatment available to patients in other parts of the world. There are over 70 million patients in India who suffer from an estimated 7000 plus rare diseases. Yet there is no treatment for more than 90 per cent of these diseases, patients of whom have to depend only on supportive therapy,” said Prasanna Shirol, Founder Member, Organisation for Rare Diseases India at an event organized by ISCR