1st Rare Disease Action Summit 2026

Rare diseases impact millions of patients and families across India, yet continue to remain underdiagnosed, under-prioritized, and under-resourced within the healthcare ecosystem. While policy frameworks like the National Policy for Rare Diseases (NPRD) have laid important foundations, the real challenge lies in translating policy intent into on-ground action, equitable access, and sustainable care models.

The Rare Disease Action Summit 2026, convened on Rare Disease Day – 11 March 2026, serves as a national platform to move the conversation from awareness to action. Bringing together policymakers, clinicians, patient advocacy groups, industry leaders, researchers, and global experts, the Summit aims to accelerate collaborative solutions that address diagnosis, treatment access, financing, and inclusion of rare diseases as a national health priority.

Anchored in the theme “Driving Action for Rare Diseases: Making Them a National Health Priority”, the Summit will focus on strengthening policy implementation, enabling public– private partnerships, advancing innovation, & ensuring patient-centric outcomes—especially for high-burden and underserved rare disease categories. Rare diseases impact millions of patients and families across India, yet continue to remain underdiagnosed, under-prioritized, and under-resourced within the healthcare ecosystem. While policy frameworks like the National Policy for Rare Diseases (NPRD) have laid important foundations, the real challenge lies in translating policy intent into on-ground action, equitable access, and sustainable care models.