Innovative Financing Models for Orphan Drugs

Rare diseases affect over 300 million individuals worldwide. With over 7000 known rare diseases, the disease burden may not seem significant. As a result, affected patients are often neglected and continue to be marginalized. To overcome this challenge, in 2021, the United Nations endorsed the first resolution on rare diseases urging the member states to provide access to safe and affordable health services to address the unique challenges faced by the patients. While efforts are being made to develop policies to support patients affected by rare diseases, much is yet to be accomplished for health service delivery. Rare disease management varies significantly across the world.