Mapping the rare disease stakeholders in India

Area of Science:

• Public Health
• Health Policy
• Rare Diseases Research

Background:

• Rare diseases (RD) collectively impact a significant global population, yet often lack prioritization in low- and middle-income countries' health policies.
• India introduced its first rare disease policy in 2021, necessitating active stakeholder participation for successful implementation.
• Limited research exists on rare disease stakeholders in India, highlighting a gap in understanding their roles and influence.

Purpose of the Study:

• To comprehensively map stakeholders within India's rare disease (RD) ecosystem.
• To analyze the power, positions, influence, and needs of various RD stakeholders.
• To inform effective rare disease policy implementation through stakeholder analysis.

Main Methods:

• Exploratory study utilizing semi-structured interviews with stakeholders.
• Analysis of news media to understand stakeholder perspectives and engagement.
• Mapping of the rare disease stakeholder landscape in India.

Main Results:

• Key stakeholders include patient organizations, research communities, policymakers, and companies.
• Policymakers and a few specialist physicians exert the most influence.
• General and allied health professionals demonstrate a significant lack of awareness and knowledge regarding rare diseases.

Conclusions:

• Effective rare disease policy implementation hinges on broad stakeholder engagement.
• Leveraging highly engaged stakeholders is crucial for policy execution.
• Targeted awareness and training programs are essential for healthcare professionals with low engagement.