The Alliance for Regenerative Medicine (ARM) Launches Foundation

ALLIANCE FOR REGENERATIVE MEDICINE (ARM) LAUNCHES FOUNDATION TO PROMOTE UNDERSTANDING AND ACCEPTANCE OF POTENTIALLY CURATIVE CELL AND GENE THERAPIES

Non-profit Foundation for Cell & Gene Medicine will educate, engage and empower patients, caregivers, scientists and industry leaders to help advance the development of cell and gene medicine.

WASHINGTON, DC, June 6, 2018 – As part of its ongoing efforts to accelerate patient access to safe, effective, and potentially curative gene therapies, the Alliance for Regenerative Medicine (ARM) today announced the launch of the Foundation for Cell & Gene Medicine. This independent, 501(c)(3) non-profit organization is dedicated to increasing public awareness and understanding of the clinical and societal benefits of cell and gene medicine — including gene therapy, gene editing, cell therapy, tissue-engineering, and organ regeneration — and supporting its development through education and research projects.

ARM is the preeminent international advocacy organization for regenerative medicines and advanced therapies and fosters research, development, investment, and commercialization of transformational treatments and cures for patients worldwide. The goal of the newly formed Foundation for Cell & Gene Medicine is to educate, engage, and empower the public and stakeholders on key scientific, clinical, and regulatory issues that affect the advancement and acceptance of cell and gene medicines as viable and transformative treatment options.

“Gene medicine is advancing at an unprecedented pace with potential to benefit millions of patients with incurable diseases,” said Janet Lynch Lambert, CEO of ARM.  “The foundation will help accelerate the public understanding and acceptance necessary for society to fully benefit from this exciting science.”

“The Foundation for Cell & Gene Medicine will serve as a resource for people to learn about gene therapy, gene editing, and cells as medicines and to help dispel common misconceptions. Through educational efforts that inform the public, media, and others on more balanced and less sensational developments in cell and gene medicine, we hope to increase acceptance of these technologies, engage more people in the clinical trial process, and help expedite the development of life-saving therapies,” said Stewart Parker, the former CEO of Targeted Genetics and board chairperson for the Foundation for Cell & Gene Medicine.

The Foundation’s first major initiative will increase awareness about the science and benefits of therapeutic gene medicine technology and help forge understanding and awareness of what can be accomplished in the next three to five years.

“The goal is to build awareness and enthusiasm about the therapeutic potential of cell and gene medicine,” said Morrie Ruffin, board member and executive director for the Foundation for Cell & Gene Medicine.  “Yet, we need to be sensitive because studies show that while people are optimistic, they have some concerns, and want to receive information from a trusted source.”

In a recent study of public perceptions about gene therapy, more than 50% of respondents said their number one concern was not receiving appropriate information[i].  Another survey showed that people are more likely to want information about gene medicine from a non-profit organization than from either a government research organization or a pharmaceutical or biotechnology company[ii].

Planned program activities and content for the Foundation include improved access to accurate content with less scientific jargon; compelling, clear illustrations that summarize the science; science briefings for various audiences including journalists, payers, and policymakers; toolkits for patient advocacy groups and medical societies to use with members; social media campaign on the value of gene medicine; public service announcements; and presentations at conferences and events.

Other initial Foundation projects include an in-depth impact analysis of cell and gene therapies and other regenerative medicines on national and international healthcare economies; and research to identify and prioritize the infrastructure, logistics, and healthcare system requirements for wide-scale adoption of transformative medicines.

To learn more about the Foundation for Cell & Gene Medicine, including partnerships and opportunities to support its programs, visit www.thearmfoundation.org.

About the Foundation for Cell & Gene Medicine:

Foundation for Cell & Gene Medicine is an independent, 501(c)(3) non-profit organization dedicated to providing education and research that will accelerate patient access to safe, efficacious and potentially curative therapies.  Its programs engage, educate 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. By increasing understanding and acceptance of these transformative technologies, the Foundation hopes to involve more people in the clinical trial process and therefore help expedite the development of life-saving therapies. To learn more, visit https://www.thearmfoundation.org.

About the Alliance for Regenerative Medicine (ARM)

The Alliance for Regenerative Medicine (ARM) is an international multi-stakeholder advocacy organization that promotes legislative, regulatory and reimbursement initiatives necessary to facilitate access to life-giving advances in regenerative medicine worldwide. ARM also works to increase public understanding of the field and its potential to transform human healthcare, providing business development and investor outreach services to support the growth of its member companies and research organizations.  ARM has more than 290 members and is the leading global advocacy organization in this field.   To learn more about ARM or to become a member, visit http://www.alliancerm.org.

[i] Robillard, Julie & Roskams-Edris, Dylan & Kuzeljevic, Boris & Illes, Judy. (2014). Prevailing Public Perceptions of the Ethics of Gene Therapy. Human Gene Therapy. 25:1-7.   https://doi.org/10.1089/hum.2014.030

[ii] Versta Research, June 2018.