Stakeholder Engagement Map for Rare Disease Policy in India

300 million people globally are affected by rare diseases, with 96 million in India. This exploratory dataset maps stakeholder power, positions, influence, and needs within India's rare disease ecosystem, created by Mohua Chakraborty Choudhury and published in March 2026. It is based on semi-structured interviews and news-media analysis.

Use Cases

• Analyze stakeholder engagement levels for groups like patient organizations, think tanks, and policymakers.
• Identify correlations between stakeholder influence and professional roles, such as rare disease specialist physicians versus general healthcare professionals.
• Map the geographic concentration of specialized stakeholders to areas like major cities.
• Assess knowledge gaps about rare diseases among allied health professionals versus other stakeholder groups.

Strengths

• CC-BY-4.0 license for open use.
• Data published in March 2026, indicating recent analysis.

Limitations

• Dataset size is 11.8 KB, suggesting a very limited scope and likely small sample size.
• No column names or row counts are provided, limiting reproducibility.
• Study is exploratory and explicitly states it does not draw conclusive inferences.

Provenance

Source

Mohua Chakraborty Choudhury via figshare.

Collection Method

Semi-structured interviews and news-media analysis.

Time Range

null

Freshness

Last updated March 2026.

Geography

India