GNE Myopathy still not part of rare disease list, NHRC pulls up Centre

The National Human Rights Commission (NHRC) has pulled up the Union ministry of health and family welfare for its continued inaction on the issue of including GNE Myopathy —a progressive and debilitating genetic disorder — under the National Policy for Rare Diseases.

- Dinesh Bothra

The commission warned that it may invoke its coercive powers under Section 13 of the Protection of Human Rights Act, 1993, if the ministry fails to submit an action taken report within four weeks.