Alison Bateman-House
Assistant Professor, Department of Population HealthNYU
Hanson Wade
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.
From: 06/07/2022 - To: 06/09/2022
All day event
1 Avenue De Lafayette, Boston, Massachusetts, United States of America
Featured Speakers
Amy Fisher
Head of Patient AdvocacySpark Therapeutics
Anne Rowzee
Associate Director for Policy, CBERFDA
Annie Ganot
Founder & VP Patient AdvocacySolid Biosciences
Craig Martin
CEOGlobal Genes
Edgar Vega
Senior Manager, Patient AdvocacyuniQure
Fernanda Copeland
Global Head, Patient Advocacy & EngagementAVROBIO
Halley Losekamp
Director, Patient EnrolmentAGTC
Jennifer Helfer
Head, Patient Advocacy & EngagementEncoded Therapeutics
Jodi Wolff
VP, Patient Engagement & AdvocacyStrideBio
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Jordanna Mora
Senior Director, Patient Advocacy & CentricityBeam Therapeutics
Karen Jackler
Program Manager, Patient Engagement, CBERFDA
Kate Trenam
Head of Patient Engagement, Early ResearchUCB
Kristen Bostrom
Associate Director, Global Patient Advocacy & EngagementBioMarin
Kristin Voorhees
Director, Patient AdvocacyUltragenyx
Pat Furlong
Founding President & CEO Parent Project Muscular DystrophyParent Project Muscular Dystrophy
Paula Orandash
Patient Engagement Liaison, Community Education Gene TherapyPTC Therapeutics
PJ Brooks
Deputy Director, Officer of Rare Diseases ResearchNIH
Safiyya Gassman
Senior Director, Policy & Public AffairsPfizer
Sara Davis
Senior Director, Patient Advocacy & Government AffairsCRISPR Therapeutics
Sarah Friedhoff
Associate Director, Patient Advocacy & Clinical AffairsAbeona Therapeutics
Tom Croce
VP, Patient Advocacybluebird bio
Vivian Fernandez
Senior Director, Patient AdvocacyREGENXBIO
Wendy Borsari
Senior Manager, Patient AdvocacyTenaya Therapeutics
