Making Rare Diseases Count: How Better Data Can Unlock a Multitrillion-Dollar Opportunity

2026

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AI-generated summary

1) Better data systems for rare diseases are crucial for improving patient outcomes, driving economic growth, and accelerating medical innovation, transforming a multitrillion-dollar challenge into an opportunity.
2) This white paper outlines five strategies to strengthen rare disease data systems: defining a minimum dataset, enhancing patient engagement, improving diagnostic capacity, enabling trusted data sharing, and leveraging AI and digital tools. It also explores tailoring these strategies to local contexts in both low- and high-income countries.
3) Rare diseases, data, healthcare, innovation, economic opportunity

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