November 13, 2019, 7:00 pm EDT
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Dr. Minikel will speak on the economics of rare disease drug development and factors on price setting. This informational and fascinating review on pharmaceutical economics will be followed by a brief discussion on appealing insurance claim denials to minimize financial struggles for families. A question and answer session will follow.
Dr. Eric Vallabh Minikel is a scientist based at the Broad Institute of MIT and Harvard and focuses his research on drug development for prion disease, a rapidly progressive neurodegenerative disease. Eric became a biomedical researcher after learning, in 2011, that his wife, Sonia Vallabh, had inherited a lethal genetic mutation in the prion protein gene. Together, their work in preclinical drug development, biomarkers, genetics, and natural history studies has helped clear the way for the ongoing development of targeted therapies designed to delay prion disease. In order to advance these therapies, they have engaged across sectors with the patient community, academia, industry, regulators, and payers. Eric received his PhD in Biological and Biomedical Sciences from Harvard in 2019. In addition to his laboratory research, he also writes a blog at CureFFI.org which covers topics ranging from human genetics to new drug technologies to the economics of the pharmaceutical industry.
Aviva Rosenberg is a health care attorney with 20 years of experience in the health care field and co-founder of the Gaucher Community Alliance. She received her J.D. with a certificate in health care law from Northwestern University. She has practiced law in Pennsylvania, Illinois and Louisiana and taught as an adjunct professor at UNC Chapel Hill and Carnegie Mellon. Aviva’s passion is educating about genetic diseases and screenings and talking about her personal journey with Gaucher disease, including being a parent of child with Gaucher as well. She lives with her husband and three boys in Pittsburgh, PA.