Enhancing Awareness and Understanding of Gene Therapy among Rare Disease Communities: A Research-Driven Roadmap

The following poster is the result of a 2017 Capstone Project conducted for Professional Patient Advocates in Life Sciences (PPALS) Patient Advocacy Certificate Program by Engage Health’s CEO, Patti Engel, and Smith Solve’s CEO, Chris Smith.  As part of this mixed-methods research, the team conducted primary interviews with industry experts and a survey with patients/caregivers.  Additionally, secondary research was conducted via a review of the literature, and a social media audit.  The research was done to better understand the knowledge and perceptions related to gene therapy across a variety of audiences.  The findings, presented here, provided the backdrop for pragmatic recommendations to improve communication and enhance awareness of gene therapy.