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Health Minister Dr. Harsh Vardhan approved the “National Policy for Rare Diseases 2021” on 30th of March. The policy document has been uploaded on the website of Ministry of Health and Family Welfare. News agency reports that different stakeholders have been demanding for a comprehensive policy for prevention and management of rare diseases for quite some time. The policy was finalised after multiple consultations with different stakeholders and experts in the area.
The Rare Diseases Policy aims to lower the high cost of treatment for rare diseases with increased focus on indigenous research with the help of a National Consortium. Increased focus of research and development and local production of medicines will lower the cost of treatment for rare diseases. The policy also envisages creation of a national hospital based registry of rare diseases so that adequate data is available for definition of rare diseases and for research and development.
The Policy also focuses on early screening and prevention through primary and secondary health care infrastructure such as Health and Wellness Centres and District Early Intervention Centres.
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