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The ARM Foundation for Cell
and Gene Medicine

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The ARM Foundation for Cell and Gene Medicine is dedicated to providing the education, information, and research needed to accelerate patient awareness of and access to transformative therapies.

 

Education and Research to Accelerate Understanding and Acceptance of Potentially Curative Therapies

 

Cell and gene medicine can produce life-changing therapies for patients suffering from incurable diseases. The ARM Foundation for Cell and Gene Medicine is dedicated to providing the education, information, and research needed to accelerate patient awareness of and access to these transformative therapies.

The Foundation is an independent, 501(c)(3) non-profit organization established in 2018 by the Alliance for Regenerative Medicine (ARM), the preeminent international advocacy organization for regenerative medicine and advanced therapies. The goal of the ARM Foundation for Cell and Gene Medicine is to educate, engage, and empower patients, caregivers, industry leaders, and other stakeholders to help advance the science and benefits of gene therapy, gene editing, cell therapy, tissue-engineering and organ regeneration.. It will accomplish this through educational and research projects that increase public awareness of the clinical and social benefits of gene medicine, which will help to expedite the development of life-saving therapies.

“Gene medicine will achieve its vast potential only when the public, patients, and caregivers understand and accept it as a safe and effective therapeutic option.”

Stewart Parker,
Board Chairperson for the ARM Foundation Foundation Programs and Projects

 

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
Founder, Global Genes

Cindy Collins
CEO, Editas

Amy Duross
CEO, Vineti

Don Gibbons
Consultant, DLG Strategic Communication

Ellen Feigal
Partner, NDA Partners, LLC

Alison Finger
Chief Commercial Officer, bluebird bio

Karin Hehenberger
Founder and CEO, Lyfebulb

Brett Kopelan
Executive Director, debra of America

Bethany Kraynack
VP Operations, ARM

Janet Lambert
CEO, ARM

Lin MacMaster
Head of Marketing and Communications, Inova Health Systems

Adrian McKemey
Managing Director and Head of R&D Strategy Solutions, IQVIA

Maria Millan
President & CEO, CIRM

David Nagler
Formerly of Audentes

Stewart Parker
Principal, Parker BioConsulting

Dennis Purcell
Founder, Senior Advisor, Aisling Partners

Brock Reeve
Executive Director, Harvard Stem Cell Institute

Martha Rook
SVP, Head of Manufacturing, Sigilon Therapeutics, Inc.

Morrie Ruffin
Executive Director, ARM Foundation

Frank Sasinowski
Hyman, Phelps and McNamara

Robin Smith
Stem for Life Foundation and CURA Foundation

Jennifer Mound Smoter
SVP, External Affairs & Communications, Intellia Therapeutics

Marshall Summar
MD, National Children’s Medical Center, NORD Board Chair

Phil Vanek
General Manager, Cell Therapy, GE Healthcare Life Sciences

Claudia Zylberberg
CEO, Akron Biotech

 

Contact:

To learn more about the ARM Foundation, including partnerships and opportunities to support its programs, please contact Morrie Ruffin, mruffin@alliancerm.org.

Media contact:
Mariesa Kemble
(608) 850 4745
kemblem@mac.com