The Indian government has taken a dominant step towards treatment of patients suffering from rare diseases. So far in this fiscal year, the government has allocated Rs. 92.84 crore for treatment of rare diseases.
As per the data available with Indian Council of Medical Research (ICMR), 9,675 patients have been enrolled since November, 2019 on the portal of National Registry for Rare and Other Inherited Disorders (NRROID) out of which 4,408 patients are from centrally governed Hospitals.
For FY 2023-24, Rs. 92.84 Crore allocated for treatment of rare disease patients in designated Centres of Excellence under National Policy for Rare Diseases (NPRD), 2021.
The government has formed three groups of disorders identified and categorized by experts based on their clinical experience. Group 1 includes disorders amenable to one-time curative treatment. Group 2 includes diseases requiring long term or lifelong treatment having relatively lower cost of treatment. While group 3 includes diseases for which definitive treatment is available but challenges are to make optimal patient selection for benefit, very high cost and lifelong therapy.
In terms of NPRD, 2021, the steps have been taken by Government for treatment of patients suffering from rare diseases include designation of eleven (11) Centres of Excellence (CoEs), which are premier Government tertiary hospitals with facilities for diagnosis, prevention and treatment
And financial support for treatment of rare diseases patients, which has been increased from up to Rs. 20 lakhs per patient to up to Rs. 50 lakhs per patient. Treatment of patients starts immediately after registration with the CoEs.