Making Rare Diseases Count 2026

Tailoring strategies to local contexts3 Adapting rare disease data strategies to local needs ensures that global ambitions translate into equitable, lasting progress. While the value of better rare disease data is universal, the pathways to achieving it vary greatly. Health systems differ widely in their resources, governance, digital infrastructure and political priorities. Strategies that succeed in one setting may fail in another if they ignore these realities. Tailoring approaches to each context requires an understanding of technical readiness alongside cultural, economic and political dynamics. This means engaging local stakeholders, building on existing capabilities and aligning with broader health and social priorities. This section outlines practical frameworks for adapting rare disease data strategies to diverse contexts. 23 Making Rare Diseases Count: How Better Data Can Unlock a Multitrillion-Dollar Opportunity