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Rare Disease Organizations and Industry Players: Collaborating Effectively to Advance R&D for Rare Disease Patients
Session Chair(s)
Ronald Joseph Bartek, MA
Co-Founder/Founding President, Friedreich's Ataxia Research Alliance (FARA), United States
Biopharmaceutical companies have increasingly shifted their efforts toward developing drugs for rare/orphan diseases. Working with rare disease organizations can be very helpful to development efforts in terms of educating development teams about patient population and unmet needs, connecting teams to scientific and clinical experts, and mobilizing patients for trial recruitment. While there are many potential benefits, there are concerns on both sides. This panel discussion will address issues and concerns from multiple perspectives with an aim to identifying best ways for organizations and companies to work comfortably and effectively with one another.
Learning Objective : Identify issues and concerns in establishing foundation-industry interactions; Describe different ways for rare disease foundations and industry to collaborate; Recognize pros and cons of different ways of interacting.
Speaker(s)
Perspectives of Umbrella Patient Organizations, Government, and Academia on Patient Organization-Industry Collaborations
Jennifer Farmer, MS
Chief Executive Officer, Friedreich's Ataxia Research Alliance (FARA), United States
Patient Organization Perspective: Experience of Parent Project Muscular Dystrophy
Patricia Furlong, BSN
Founding President and Chief Executive Officer, Parent Project Muscular Dystrophy, United States
Industry Viewpoints on Patient Organization-Industry Collaborations
Angie Wilson
Director, Alliance and Advocacy Relations, BioOncology, Genentech, A Member of the Roche Group, United States
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