National Rare Diseases Committee

On 19th May, 2023, the Delhi High Court constituted a five-member ‘National Rare Diseases Committee’ to implement the National Policy for Rare Diseases 2021.

Need

  • According to HC, there is lack of coordination between the medical community, the providers of therapies for rare diseases and the governmental agencies.
  • Under the current framework, the centres for excellence are not centrally coordinated, leading to lack of timely availability and adequate therapies for patients with rare diseases, mostly children.

About National Policy for Rare Diseases 2021

Key Provisions

  • Promotion of research and development for diagnosis and treatment of rare diseases
  • Promotion of local ....
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