Future of Health Summit 2019

The Outsized Role of Philanthropy in Curing Rare and Emerging Diseases

With nearly 7,000 rare diseases affecting 30 million Americans, rare diseases are, in fact, not so rare. According to the Orphan Drug Act of 1983, rare disease is defined as any disease affecting fewer than 200,000 Americans. As a result, rare and emerging diseases are often passed over for funding in both the public and private sectors, presenting challenges for the development of therapies, patients' quality of life, and ultimately, cures. Government funding is often constrained while financial incentives for the pharmaceutical industry may be diminished due to small market sizes. Despite these challenges, philanthropic investment is positioned to play an outsized role in this space as it shoulders risks that other sectors will not. This session will explore how philanthropy is able to shape the discourse and direction of rare and emerging disease fields where the science may be nascent or underdeveloped.