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
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
SESSION 2 | POLICY & ADVOCACY PLENARY
Inclusion, Implementation & Impact: Strengthening the National Policy for Rare Diseases (NPRD)
To examine policy frameworks and implementation challenges under the NPRD.
SESSION 3 | FROM CARE TO HOPE
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
SESSION 4 | SPECIAL SESSION
Rare Diseases: Addressing Treatment Access & Long-Term Sustainability
To address the unique access and affordability challenges associated with Category 3 rare diseases
SESSION 5 | PATIENT & CAREGIVER PERSPECTIVES
Living Rare: The Human Cost of Delayed Diagnosis & Limited Access
To highlight real-world patient and caregiver experiences and systemic gaps
SESSION 6 | ACCESS, AFFORDABILITY & PARTNERSHIPS
Beyond Treatment: Building Sustainable Rare Disease Ecosystems
To identify collaborative models that improve access, affordability, and continuity of care
SESSION 7 | CLOSING PLENARY – CALL TO ACTION
The Rare Disease Action Roadmap: Commitments Beyond 2026
To consolidate Summit deliberations into a clear, action-oriented roadmap
Past Speakers
Associate Consultant – Institute of Medical Genetics & Genomics
Sir Ganga Ram Hospital, New Delhi, India.
Professor – Pediatrics
All India Institute of Medical Sciences (AIIMS), Bhopal, India.
Founder Director – Patient Advocacy,
Cure SMA Foundation of India, Hyderabad, India.
Child Neurology Division & Coordinator – DM Paediatric Neurology Programme, Department of Pediatrics
All India Institute of Medical Sciences, New Delhi
Head – Diagnostics Division
Centre for DNA Fingerprinting and Diagnostics (CDFD), Hyderabad, India.
Director – Patient Academy for Innovation and Research (PAIR) & CEO
DakshamA Health and Education
Associate Professor – Department of Pediatric Medicine
JK Lone Hospital, SMS Medical College, Jaipur, India
Professor – Pediatrics & In-Charge, Genetic Clinic and Pediatric Genetics Research Laboratory
Seth G.S. Medical College & KEM Hospital, Mumbai, India.
Former Director & CEO – AIIMS Bhopal; Director Medical Research
Aarupadai Veedu Medical College (Vinayaka Mission’s Research Foundation), Pondicherry, India.
Director of Pediatrics & Senior Consultant – Pediatric Nephrology
Indraprastha Apollo Hospitals, New Delhi, India.
Country Lead and Managing Director & General Manager, Pharma,
Sanofi India Limited, India.
Director Professor, Department of Paediatrics & Head,
Maulana Azad Medical College & Lok Nayak Hospital, New Delhi
Emeritus Scientist, Former Professor & Head – Department of Pediatrics (Division of Genetics)
Indian Council of Medical Research (ICMR), All India Institute of Medical Sciences (AIIMS)
Assistant Director General (ADG), Directorate General of Health Services
Ministry of Health & Family Welfare, Government of India.
Hon’ble Member of Parliament (Rajya Sabha) & Chairperson
Indian Medical Parliamentarians’ Forum, India.
Hon'ble Minister of State for Social Justice and Empowerment
Government of India
Past Partners
Past IHW Council Partners
Past Edition Live Event
Past Event Highlights
GET IN TOUCH
IHW Council
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