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Patient groups ask Harsh Vardhan to come up with interim assistance for patients with rare diseases

Vardhan recently directed ministry officials to expedite the process of formulating the NPTRD.

August 27, 2019 / 02:34 PM IST

Concerned over the 'delay' in the implementation of a national policy for treatment of rare diseases, patient advocacy groups have appealed to the Union Health Ministry to come up with an immediate interim arrangement to support treatment of patients diagnosed with such ailments.

Organization for Rare Disease India (ORDI) and Lysosomal Storage Disorder Support Society (LSDSS) have written to Union Health minister Harsh Vardhan asking him to provide an interim assistance till the National Policy Treatment of Rare Diseases (NPTRD) is formulated.

Vardhan recently directed ministry officials to expedite the process of formulating the NPTRD.

The policy was announced by the government in 2017 with a corpus of Rs 100 crore to provide financial aid for treatment of patients suffering from rare ailments.