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Legal Central Ministry of Health & Family Welfare Family Planning Insurance Scheme 2011

Inclusion of Additional Rare Diseases under National Policy for Rare Diseases (NPRD), 2021

18-Jan-2023 | NA

Ministry of Health & Family Welfare has issued 6 Rare Diseases with categorization under para 6.2 of National policy for Rare Diseases (NPRD), 2021. Para 6.2 of National policy for Rare Diseases (NPRD), 2021 provides definition for rare diseases. The diseases included with categorization under para 6.2 of National policy for Rare Diseases (NPRD), 2021 are as follows: - Group 1: Disorders amenable to one-time curative treatment: - i. Laron's Syndrome Group 2: Diseases requiring long term / lifelong treatment having relatively lower cost of treatment and benefit has been documented in literature and annual or more frequent surveillance is required: - (b) Disorders that are amenable to other forms of therapy (hormone/ specific drugs: - i. Wilson's Disease. ii. Congenital Adrenal Hyperplasia (CAH) iii. Neonatal Onset Multisystem Inflammatory Disease (NOMID). Group 3: Diseases for which definitive treatment is available but challenges are to make optimal patient selection for benefit, very high cost and lifelong therapy: - i. Hypo phosphatic Rickets. ii. Atypical Hemolytic Uremic Syndrome (AHUS) The financial assistance to the patients suffering from the above-mentioned rare diseases shall be provided as per the provisions envisaged under the NPRD, 2021 and guidelines and procedures issued to all centers of Excellence (CoEs) For more details, refer the attached document.

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