Born unlucky: Challenges people with rare diseases face just to stay alive

“Of all forms of inequality, injustice in health care is the most shocking and inhumane.” Martin Luther King Jr’s famous saying found a mention in the introductory observations of Justice Manmohan of the Delhi High Court, while deciding on a writ petition on April, 17, 2014.
The “inequality, injustice” that Justice Manmohan was referring to was the plight of a 7-year-old boy suffering from a little-known and very rare genetic disorder called Gaucher’s disease (GD). This usually occurs in children, with the incidence of about 1 in 5,000 births. A delay in diagnosis or lack of treatment leaves the patient at risk of irreversible damage, which eventually leads to loss of body function and a painful death.

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