On 28th February 2026, at Genetics Decoded, a public outreach event held to mark National Science Day and Rare Disease Day 2026 at the Infosys Science Foundation, Bengaluru we released a white paper ‘Enabling a More Effective Ecosystem of Innovation and Care for Rare Diseases’, developed through multi-stakeholder discussions on advancing rare disease research and clinical trials in India.
The report brings together insights from the National Conference on Advancing Clinical Trials in Rare Diseases (ACTRaD) meeting where various rare disease stakeholders, patients, clinicians, researchers, regulators, and industry participated to outline practical pathways for strengthening India’s rare disease ecosystem.
The report highlights:
- Regulatory and ethical reforms to accelerate clinical trials
- Stronger national data infrastructure and patient registries
- Patient-centric trial design and advocacy
- Increased funding and innovation in R&D
- Integrating rare diseases into public health systems for better access to care
As India builds capacity in genomics, digital health, and translational research, these recommendations aim to help create a coordinated ecosystem that can accelerate discovery, enable clinical development, and ultimately improve access to therapies for rare disease patients.
We hope this document contributes to ongoing policy dialogue and collaborative action toward a more responsive and innovation-driven rare disease landscape.
