A Data Strategy to Capitalize on a Multi Trillion Dollar Opportunity

Rare diseases are often thought about in terms of the financial burden they create, but a new paper from the World Economic Forum urges policymakers, payers, and business leaders to see them as one of the greatest underappreciated opportunities in global health. In “Making Rare Diseases Count: How Better Data Can Unlock a Multi-Trillion Dollar Opportunity,” the organization argues that high-quality, patient-centered data must sit at the core of any rare disease strategy. We spoke to Will Greene, lead author of the paper and a board member of the Foundation for Prader-Willi Research, about the need for smarter collection, sharing, and analysis of data; how doing so can unlock outsized returns in human health, and what it will take to mobilize a broad set of stakeholders around that vision.