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Rare diseases policy still in draft state

Karnataka is the only state to have a Centre of Excellence for Rare Diseases at the government-run Indira Gandhi Institute of Child Health in Bengaluru. 

Published: 01st December 2018 08:27 AM  |   Last Updated: 01st December 2018 08:27 AM   |  A+A-

Express News Service

BENGALURU: Much before the country formed a National Policy on Rare Diseases in May 2017, Karnataka had drafted a Comprehensive Rare Diseases and Orphan Drug Policy that had been submitted to the health secretariat in February 2016. However, the same is yet to be enforced.

Prasanna Shirol, the co-founder and executive director of Organisation for Rare Disease India (ORDI) said, “We have neither implemented the National Policy on Rare Diseases nor got the state draft policy to go any further. We filed a public interest litigation in the Supreme Court on October 12 this year for the implementation of the national policy in Karnataka.”

Karnataka is the only state to have a Centre of Excellence for Rare Diseases at the government-run Indira Gandhi Institute of Child Health in Bengaluru. 

“Under the policy, the central technical committee has been formed in Delhi but the state technical committees are yet to be formed. We had submitted 10 names from the state but due to the recent retirement of IGICH director, things are in a state of limbo. We expect a hearing in the apex court soon,” Shirol said.  



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  • J.veera venkata Choudary

    I am Telugu man my name is j.veera venkata Choudary my age is 30 I am suffering from muscular dystrophy (neurogenetic atrophy). Symptoms are not possible walk
    2 years ago reply
    • Prasanna Kumar B Shirol

      Please call ORDI Helpline 8892 555 000
      2 years ago reply
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