Special Session: Funding Rare Disease Research

Sustaining rare disease research requires funding models that account for small populations, long development timelines, and limited commercial incentives. This session will examine broad approaches to funding rare disease research and the roles that patient advocacy organizations, academic institutions, and industry partners can play across different stages of development.

Moderator: Tracey Sikora, Vice President of Research and Clinical Programs, NORD

Panelists:

• Michael Hund, MBA, CEO, EB Research Partnership
• Matthew S. McCoy, PhD, Assistant Professor, Medical Ethics and Health Policy, University of Pennsylvania, Perelman School of Medicine, a NORD Rare Disease Center of Excellence
• Nicole Paulk, PhD, CEO, Founder, President, Siren Biotechnology

View Slideshow Presentation from this Session