Add to Calendar 5/2/2019 8:00:00 AM 5/2/2019 10:00:00 AM Power of the Patient: How Patient Foundations Connect Academia, Industry & Regulators to Accelerate Clinical Development
Never before has the power of the patients been more evident in clinical research and development as evidenced by successful collaborations and regulatory trends. The process of therapeutic development has historically prioritized scientific concerns critical to the pathophysiology of disease indications (including pathways and mechanisms) in an effort to advance programs as efficiently as possible. Moreover, the organizations most involved in drug discovery and development in the past have largely been academia, biopharma and regulators. In the past decade, there is greater understanding that accelerating these efforts into the clinic can hit roadblocks due to reasons beyond scientific rationale – including an under appreciation for the key role that patient engagement can play towards successfully bringing safe and effective therapies reflective of the needs of patients who would most benefit. Incorporating the patient voice along with academia, industry and regulatory bodies can only strengthen this foundation of organizations already determined to address clinical unmet needs. Join our speakers and MassBio NonProfit Committee for an interactive and informative discussion on this important topic. MassBio, 300 Technology Square 8th Fl, Cambridge, MA 02139
Senior Director Patient Advocacy and Engagement, Encoded Therapeutics Inc.
Jennifer Helfer is working within the advocacy community to positively disrupt the healthcare system to create access, transparency, and education so that gene therapy can become available to all those who can benefit. Jen joined bluebird bio in December of 2015. As part of the Patient Advocacy team, Jen serves as a conduit to patient advocates and advocacy organizations. The Patient Advocacy team is responsible for building and sustaining trusting relationships and collaborations with key stakeholders around shared goals to address patients’ and their families’ needs, as well as facilitate the integration of patient and caregiver perspective throughout the nest to inform decisions made at bluebird bio. Before joining bluebird bio, Jennifer was Associate Director of Scientific Operations at the National Brain Tumor Society, the largest nonprofit organization dedicated to the brain tumor community in the United States. Prior to finding her passion in advocacy, Jennifer engaged in basic research at Boston University Medical Center. Jennifer received a B.A. in Psychology from the University of North Carolina Wilmington, a M.A. in Behavioral Neuroscience from the University of Delaware, and a PhD in Biology, Neuroscience, from the University of Victoria.