2nd Rare Disease Action Summit 2027

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2nd RARE DISEASES Action SUMMIT 2027

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 2027, convened on Rare Disease Day – 11 March 2027, 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.

Key Discussion Points

Key Objective

Past AGENDA

SESSION 1 | OPENING PLENARY
Rare Disease Day 2026: A Collective Call for Action

To formally inaugurate the Summit and set a tone of urgency, empathy, & shared national responsibility

Inclusion, Implementation & Impact: Strengthening the National Policy for Rare Diseases (NPRD)

To examine policy frameworks and implementation challenges under the NPRD.

Where Giving Comes Full Circle: Creating Lifelines for Rare Lives

To bring together compassionate individuals & philanthropic leaders to explore how thoughtful giving can bridge critical gaps in diagnosis, treatment access, & long-term support for rare disease patients— ensuring no family faces their journey alone

Rare Diseases: Addressing Treatment Access & Long-Term Sustainability

To address the unique access and affordability challenges associated with Category 3 rare diseases

Living Rare: The Human Cost of Delayed Diagnosis & Limited Access

To highlight real-world patient and caregiver experiences and systemic gaps

Beyond Treatment: Building Sustainable Rare Disease Ecosystems

To identify collaborative models that improve access, affordability, and continuity of care

The Rare Disease Action Roadmap: Commitments Beyond 2026

To consolidate Summit deliberations into a clear, action-oriented roadmap

Past Speakers

Past Partners

Past IHW Council Partners

Past Edition Live Event

Past Event Highlights

GET IN TOUCH

IHW Council

Level 3B, DLF Centre, Sansad Marg,

Connaught Place,New Delhi – 110001

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