The purpose of the inaugural 2020 LSPA Patient Summit is to provide patient advocacy groups and public officials with a forum to learn about exciting developments in the life sciences ecosystem and better understand the interaction between payers, patients, innovators and policy makers. Topics for the Summit were derived from feedback provided by the LSPA Patient Advocacy Groups.
8:30 a.m. - 9:15 a.m. – Welcome - Chris Molineaux, President & CEO, Life Sciences PA
Opening Keynote - David Fajgenbaum, MD, MBA, MSc, Assistant Professor of Medicine, Translational Medicine & Human Genetics, University of Pennsylvania, Founding Director, Center for Cytokine Storm Treatment & Laboratory (CSTL), Associate Director, Patient Impact, Orphan Disease Center, University of Pennsylvania, Co-Founder & Executive Director, Castleman Disease Collaborative Network (CDCN)
9:20 a.m.-10:00 a.m. – The Patient/Payer Discussion
Christine Ferguson, LEVERAGE
Dharma Yechuri, LEVERAGE
10:05 a.m.-10:45 a.m. – Successful Company Partnerships – A Case Study
Maria Picone, Co-Founder/CEO, Trend Community
Rachel Radomski, Director, Patient Advocacy, Harmony Biosciences
10:45 a.m. – 11:00 a.m. – Break
11:00 a.m. – 11:30 a.m. – Breakthrough Story
Vikki Walton, Director of State Public Policy & External Affairs, Novartis
Gwendolyn Poles, MD, President, Sickle Cell Council & sickle cell patient
11:35 a.m.- 12:05 p.m. – Making the Case to Legislators
Representative Marcy Toepel, Chair, Rare Disease Caucus
12:10 p.m. – 1:00 p.m. – Legislative Meet-Up
