The Ministry of Health and Family Welfare has significantly advanced its support for patients with rare diseases through the National Policy for Rare Diseases (NPRD), which was launched in March 2021. This policy represents a substantial effort to address the needs of individuals with rare diseases by offering financial assistance and establishing specialized care centers across the country.

The NPRD categorizes rare diseases into three distinct groups. The first group includes disorders amenable to one-time curative treatments, such as certain lysosomal storage disorders and immune deficiency disorders. The second group comprises diseases that require long-term or lifelong treatment but have relatively lower costs, including metabolic disorders and cystic fibrosis. The third group covers diseases for which treatment is available but comes with high costs and challenges, such as Gaucher Disease and Spinal Muscular Atrophy.

A key feature of the NPRD is the establishment of twelve premier government hospitals as Centres of Excellence (CoEs). These institutions, including the All India Institute of Medical Sciences (AIIMS) in New Delhi and the Sanjay Gandhi Post Graduate Institute of Medical Sciences in Lucknow, are equipped for the diagnosis and treatment of rare diseases. The policy provides financial support of up to Rs. 50 lakhs per patient for treatment at these CoEs. Since its launch, a total of 1,118 patients have benefited from this financial assistance.

In addition to financial support, the policy includes exemptions from Goods & Services Tax (GST) and Basic Customs Duty for drugs imported specifically for rare diseases. The National Consortium for Research and Development on Therapeutics for Rare Diseases (NCRDTRD) has been established to streamline research efforts and develop effective treatments.

The NPRD’s coverage has expanded to include 63 rare diseases, with recent additions such as Laron Syndrome and Primary Hyperoxaluria Type 1. Patients can now access treatment at any of the twelve designated CoEs, ensuring broader accessibility and improved outcomes.

This policy marks a significant commitment to enhancing the quality of life for individuals with rare diseases by providing not only financial aid but also access to specialized care and ongoing research. For more information, patients and healthcare providers are encouraged to visit the Ministry of Health and Family Welfare’s official website or contact their nearest Centre of Excellence.