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National Rare Diseases Committee

News: By creating a five-member panel to properly administer the Center’s rare illnesses policy, the Delhi High Court has taken a proactive move to address the issues faced by patients with rare diseases.

The National Rare Diseases Committee, a group, seeks to guarantee that patients registered with the All-India Institute of Medical Sciences (AIIMS), Delhi, receive prompt care and gain from the policy.

The Committee’s general charge would be to take all necessary actions to achieve the National Rare Disease Policy by 2021.

In order to implement the rare diseases policy and provide effective care for patients, the Delhi High Court established the National Rare Diseases Committee, a five-member group that would collaborate to address the issues encountered by patients with rare diseases.

The committee is made up of authorities from related sectors, including doctors, policymakers, and representatives from hospitals.

national policy for rare diseases 2021:

Increased emphasis on locally produced medicines and indigenous research.

Reduce the price of treating rare diseases.

To prevent uncommon diseases, screen for them and find them early.

Important Clauses of the Policy:

Group 1: Disorders that can be cured with a single treatment.

Group 2: Conditions that demand permanent or protracted medical care.

Group 3 includes illnesses for which a treatment is accessible but with difficulties in patient selection, significant costs, and lifetime therapy.