Priorities

Policy Shame: Sick, Rare And Ignored

Policy Shame: Sick, Rare And Ignored

by The Daily Eye Team March 11 2016, 5:31 pm Estimated Reading Time: 0 mins, 43 secs

Rare diseases are a diverse set of over 7,000 different conditions that afflict an estimated 1 in 20 Indians and 350 million people worldwide. Put simply, it means that every bus on the road with a full complement of passengers possibly has two people with a rare disease.
Rare diseases are often congenital, chronic, debilitating and fatal. For instance, muscular dystrophy is a group of rare muscle diseases that cause progressive weakness because the body is unable to produce healthy muscles. Therefore, patients gradually lose their ability to walk, carry out daily tasks or even swallow and breathe. A significant proportion of rare diseases occur in children, many of whom do not survive beyond their fifth birthday. Most rare diseases have no cure or treatment and for thousands of rare diseases, there is no ongoing research effort to develop a treatment.

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