As many as 7000 rare diseases have been identified across the world but in India, there is no health care policy to address this. These rare conditions can be life threatening, progressive and chronic. A policy must be there for the diagnosis, treatment and supportive care for the individuals who are affected with these diseases. In 2015, a PIL was filed in Delhi high court followed by the court’s instruction to the central government to prepare a policy regarding this issue. According to Dr. P.
Shirol, co-founder of Organization for the Rare Disease India (ORDI), Bengaluru drafting a rare disease policy in India is challenging. According to WHO, 6-7% of the population is affected with rare diseases. This makes an alarming number of people are affected in India. But there is no proper data maintained in India which is the biggest challenge. However, the government has recently submitted…
