The National Policy for Rare Diseases (NPRD) should cover all rare diseases for financial support. Rare diseases are hard to diagnose because doctors might not know about them and there aren’t enough diagnostic tools. Research on rare diseases is also hard because there aren’t many people who have them. Most rare diseases don’t have treatments, and the ones that do can be very expensive. The NPRD was made to help with these challenges. The policy was released by the Union Health Ministry in 2021 after talking to experts.
There are around 8000 rare diseases, but less than 5% have treatments. This means that most people with rare diseases can’t get help. Six more rare diseases were added to the NPRD: Laron’s Syndrome, Wilson’s Disease, Hypophosphatemic rickets, Congenital Adrenal Hyperplasia (CAH), Neonatal Onset Multisystem Inflammatory Disease (NOMID), and Atypical Hemolytic Uremic Syndrome (AHUS). These diseases will now be covered by the policy.
Financial help will be given to patients with rare diseases under the NPRD. Patients can get up to Rs. 50 lakh for treatment at a Centre of Excellence (CoE) listed in the policy. A rare disease affects a small number of people compared to other diseases, and there are over 7,000 rare diseases globally. About 450 rare diseases have been reported in India, and 70 million people in India have a rare disease.
The government should include all rare diseases under the NPRD so that patients have more hope for treatment.
