This white paper by Roche and IQVIA explores sustainable funding for rare diseases, consolidating insights from prior reports and expanding with 159 global case studies across 50+ countries. Nearly half of initiatives are in Europe and North America, while only a third are in LMICs, highlighting inequities. Most funding comes from multi-source crowdfunding (63%), with fewer government schemes (23%), blended finance (11%), and private insurance (3%). The report identifies three imperatives: collaborative advocacy, standardization of care, and dedicated funding/reimbursement. These pillars aim to build sustainable ecosystems that improve diagnosis, access, and long-term patient outcomes.

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