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2nd Annual Gene Therapy Patient Engagement Summit

2nd Annual Gene Therapy Patient Engagement Summit


Date of beginning

Tuesday, 07 June 2022


3 days




United States


Hollie Bulfin


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As investment in gene therapies continues to grow rapidly, more effectively engaging patients throughout development has become a priority for any company serious about building safer and more meaningful gene therapy programs. In this context, the 2nd Annual Gene Therapy Patient Engagement Summit will unite patient advocacy and engagement leaders from gene therapy and gene editing drug developers, patient groups and patients themselves to address the specific challenges of genetic therapy patient engagement, generating actionable insights through detailed case studies and open, honest discussions. Join us to hear directly from companies and institutions including Spark Therapeutics, Ultragenyx, FDA, Global Genes, and CRISPR Therapeutics on key topics including managing expectations across gene therapy development, navigating patient input on one-time transformative treatments with novel clinical trial designs combined with extensive follow-ups, and developing educational materials on gene therapy to raise awareness in collaboration with patient advocacy organizations. Leverage their knowledge and experiences to ultimately ensure effective creation and implementation of patient-centric gene therapy programs. Tickets,Brochure, Prices:Conference Only - Industry Rate USD 2999.00,Conference + Workshop OR Focus Day - Industry Rate USD 4297.00,Conference Only - Not for Profit USD 2599.00,Conference + Workshop OR Focus Day - Not for Profit USD 3697.00 Speakers: Alison Bateman-House, Assistant Professor, Department of Population Health, NYU, Amy Fisher, Head of Patient Advocacy, Spark Therapeutics, Anne Rowzee, Associate Director for Policy, CBER, FDA, Annie Ganot, Founder & VP Patient Advocacy, Solid Biosciences, Craig Martin, CEO, Global Genes, Edgar Vega, Senior Manager, Patient Advocacy, uniQure, Fernanda Copeland, Global Head, Patient Advocacy & Engagement, AVROBIO, Halley Losekamp, Director, Patient Enrolment, AGTC, Jennifer Helfer Head, Patient Advocacy & Engagement, Encoded Therapeutics, Jodi Wolff, VP, Patient Engagement & Advocacy, StrideBio, Jordanna Mora, Senior Director, Patient Advocacy & Centricity, Beam Therapeutics, Karen Jackler, Program Manager, Patient Engagement, CBER, FDA, Kate Trenam, Head of Patient Engagement, Early Research, UCB, Katherine Beaverson, Senior Director and Patient Advocacy Lead, Rare Disease Research Unit, Pfizer, Kristen Bostrom, Associate Director, Global Patient Advocacy & Engagement, BioMarin, Kristin Voorhees, Director, Patient Advocacy, Ultragenyx, Luke Pembroke, Patient, Pat Furlong, Founding President & CEO Parent Project Muscular Dystrophy, Parent Project Muscular Dystrophy, Paula Orandash, Patient Engagement Liaison, Community Education Gene Therapy, PTC Therapeutics, PJ Brooks, Deputy Director, Officer of Rare Diseases Research, NIH, Safiyya Gassman, Senior Director, Policy & Public Affairs, Pfizer, Sara Davis, Senior Director, Patient Advocacy & Government Affairs, CRISPR Therapeutics, Sarah Friedhoff, Associate Director, Patient Advocacy & Clinical Affairs, Abeona Therapeutics, Tom Croce, VP, Patient Advocacy, bluebird bio, Vivian Fernandez, Senior Director, Patient Advocacy, REGENXBIO, Wendy Borsari, Senior Manager, Patient Advocacy, Tenaya Therapeutics Date and Time: Starts: Tue, Jun 7, 2022 ( 9:00 AM) and Ends: Thu, Jun 9, 2022 ( 4:00 PM) Venue details: Hyatt Regency Boston, 1 Avenue de Lafayette, Boston, Massachusetts, 02111, United States