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UID:1@gauchercommunity.org
DTSTART;TZID=America/New_York:20191113T190000
DTEND;TZID=America/New_York:20191113T190000
DTSTAMP:20191114T181545Z
URL:https://www.gauchercommunity.org/events/rare-drug-disease-pricing/
SUMMARY:Rare Drug Disease Pricing - How We Got Here and Steps to Minimize Y
 our Financial Burden
DESCRIPTION:Click here to view the webinar\nDr. Minikel will speak on the e
 conomics of rare disease drug development and factors on price setting. Th
 is informational and fascinating review on pharmaceutical economics will b
 e followed by a brief discussion on appealing insurance claim denials to m
 inimize financial struggles for families. A question and answer session wi
 ll follow.\n\nDr. Eric Vallabh Minikel is a scientist based at the Broad I
 nstitute of MIT and Harvard and focuses his research on drug development f
 or prion disease\, a rapidly progressive neurodegenerative disease. Eric b
 ecame a biomedical researcher after learning\, in 2011\, that his wife\, S
 onia Vallabh\, had inherited a lethal genetic mutation in the prion protei
 n 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 w
 ith 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 t
 echnologies to the economics of the pharmaceutical industry.\n\nAviva Rose
 nberg 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 Universit
 y. She has practiced law in Pennsylvania\, Illinois and Louisiana and taug
 ht as an adjunct professor at UNC Chapel Hill and Carnegie Mellon. Aviva's
  passion is educating about genetic diseases and screenings and talking ab
 out her personal journey with Gaucher disease\, including being a parent o
 f child with Gaucher as well. She lives with her husband and three boys in
  Pittsburgh\, PA.
CATEGORIES:Webinars
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