Draft National Policy for Rare Diseases placed in website of Ministry of Health and Family Welfare

On March 17, 2020, the draft National Policy for rare diseases has been shared in the website of ministry of Health and Family Welfare. The draft has been opened for comments from the states and Union territories and also from General public.

Also, the ministry has included one-time financial assistance of Rs 15 lakhs to families affected with rare diseases and living under Below Poverty line. This has been included from Rashtriya Arogya Nidhi

The above information was provided by Minister of HFW in Rajya Sabha

National Policy for Rare Diseases

The draft National Policy for rare diseases was published by the Ministry of Health and Family Welfare in January 2020. IT was prepared in 2017 and was recommended to a committee for review.

There is need for the policy as there are more than 450 rare diseases in India. Out of these diseases only 5% of them have therapies available.

The policy aims to start a registry of rare diseases. The registry is to be maintained by Indian Council of Medical Research (ICMR). The policy categorizes rare diseases under three categories namely one-time curative treatment, diseases requiring long-term treatments with high cost and diseases requiring long-term treatments with low cost.

Rashtriya Arogya Nidhi

The Rashtriya Arogya Nidhi also called National Illness Assistance Fund is a scheme completely sponsored by the central government. Under the scheme, financial assistance is provided to patients suffering from life threatening diseases as a one-time grant.

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