15 Mar 2023 • "Under the National Policy for Rare Diseases (NPRD), 2021, the Union Health Ministry has incorporated six rare diseases, including Hypophosphatic Rickets, Wilson's Disease, Congenital Adrenal Hyperplasia (CAH), Neonatal Onset Multisystem Inflammatory Disease (NOMID), and Atypical Hemolytic Uremic Syndrome (AHUS). Based on the NPRD, which was launched in March 2021, the Ministry has chosen to divide the diseases into three groups for the purpose of treating patients with rare diseases.

• Group 1: Disorders amenable to one-time curative treatment, includes Laron’s syndrome.
• Group 2: Disorders that are amenable to other forms of therapy (hormone/ specific drugs), includes Wilson’s Disease, Congenital Adrenal Hyperplasia (CAH), and Neonatal Onset Multisystem Inflammatory Disease (NOMID).
• Group 3: Diseases for which definitive treatment is available, but challenges are to make an optimal patient selection for benefit, very high cost, and lifelong therapy, includes Hypophosphatic Rickets, and Atypical Hemolytic Uremic Syndrome (AHUS).

The inclusion of six new diseases under NPRD in 2021 will make it possible for patients to access financial aid for treatment. Under the Policy, the provision for financial support of up to Rs. 50 lakhs to patients suffering from rare diseases and for treatment in any of the Centers of Excellence (CoEs) mentioned in NPRD-2021, outside the Umbrella Scheme of Rashtriya Arogaya Nidhi.

Source: Medical Dialogues | Read full story

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