The Foundation has begun three initiatives led by Steering Committees of leading experts in the fields of health economics, public policy, communications, market access, manufacturing, precision medicine, and patient advocacy. These three programs are:
Gene Medicine Education Program
This multi-year program began in 2018 with extensive market research on public and patient/caregiver perceptions and attitudes about gene medicine. It will provide the public with accurate, jargon-free information about the science, benefits, limitations, and possible risks of therapeutic gene medicine technology and encourage news and social media influencers to cover gene medicine in a more balanced way with less emphasis on the sensational.
Planned program activities and content include:
- Compelling, clear illustrations that summarize the science
- Science briefings for journalists and policymakers
- Fact sheets and information kits for patient advocacy groups and medical societies
- Social media campaign on the value of gene medicine
- Public service announcements
- Speaking engagements and calls to participate in conferences and events
Economic Impact Project
The Foundation will conduct research that provides in-depth analyses of the impact of regenerative medicines on national and international healthcare economies. It also is planning to do a pharmaco-economic analysis using advanced economic simulation models of regenerative medicines in several major disease areas to quantify the value of curative therapies compared to the current standard of care.
Industrialization of Gene and Cell Therapies
This research project will identify and prioritize the infrastructure, logistics, and healthcare system requirements essential to support widespread adoption of these transformative medicines. It will explore in depth the components of these therapeutic platforms and how they could leverage manufacturing breakthroughs while integrating technologies such as next-gen sequencing, and other precision medicine tools in imaging and healthcare IT.
ARM Foundation Board of Directors
- Nicole Boice, Co-Founder and Executive Director, RARE-X
- Cindy Collins, CEO, Editas Medicine
- Amy Duross, Co-Founder and CEO, Vineti
- Ellen Feigal, MD, Partner, NDA Partners, LLC
- Alison Finger, Chief Commercial Officer, bluebird bio
- Pat Furlong, Founding President and CEO, Parent Project Muscular Dystrophy (PPMD)
- Don Gibbons, Consultant, DLG Strategic Communication
- Brett Kopelan, Executive Director, debra of America
- Alexandra Levine MD, Chief Medical Officer, City of Hope
- Michael May, PhD, CEO, CCRM
- Adrian McKemey, PhD, R&D Strategy Solutions, the Consulting Group, QuintilesIMS
- Maria T. Millan, MD, President and CEO, California Institute for Regenerative Medicine (CIRM)
- David Nagler, formerly of Audentes
- Stewart Parker, Principal, Parker BioConsulting
- Matt Patterson, Strategic Advisor, Audentes, An Astellas Company
- Dennis Purcell, Founder, Senior Advisor, Aisling Partners
- Brock Reeve, Executive Director, Harvard Stem Cell Institute
- Martha Rook, PhD, Senior Vice President, Head of Manufacturing, Sigilon Therapeutics, Inc.
- Morrie Ruffin, Executive Director, ARM Foundation
- Frank Sasinowski, Director, Hyman, Phelps & McNamara, PC
- Bob Smith, Senior Vice President, Global Gene Therapy, Pfizer, Inc.
- David Smith, Of Counsel, Pepper Hamilton, LLP
- Robin L. Smith, MD, President & Chair, Cura Foundation
- Jennifer Mound Smoter, SVP, External Affairs & Communications, Intellia Therapeutics
- Phil Vanek, PhD, Partner, Gamma Biosciences
- Michael Werner, Partner, Holland and Knight, LLC
- Claudia Zylberberg, PhD, CEO, Akron Biotech
To learn more about the ARM Foundation for Cell & Gene Medicine, including partnerships and opportunities to support its programs, please contact firstname.lastname@example.org.