The Secret Sauce for Forward Movement in Research and Scientific Collaborations

August 3, 2021

Getting to a treatment or cure for rare diseases means engaging in scientific research. But you want to be sure that the scientific research moves toward a therapy rather than repeating old findings or pursuing an avenue of research with little promise. How can leaders of rare disease patient advocacy organizations assess the research landscape and accelerate research and drug development?

One approach highlighted by many as a best practice is bringing on board a Chief Science Officer (CSO) to sort through the scientific information and provide dedicated, targeted guidance. Hear from rare disease leaders about how a CSO can transform your organization’s research efforts.


Molly White
Chief Executive Officer
Myotonic Dystrophy Foundation

John Porter, Ph.D.
Neuromuscular Disease Consultant

This session is from the 2020 RARE Patient Advocacy Summit.

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