Rare Daily Staff

The Alliance for Regenerative Medicine has launched the ARM Foundation for Cell and Gene Medicine to educate and engage the public on issues that affect the advancement and acceptance of cell and gene medicines as 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 is in part a response to growing concerns about the lack of accessible information to the public about gene therapy. A recent study of public perceptions found that more than half of the respondents said their top concern was not receiving appropriate information. 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.

“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 ARM Foundation. “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.”

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.

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

Planned program activities and content for the foundation include improved access to accurate content that summarize the science without jargon, 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.

“The ARM Foundation will serve as a resource for people to learn about gene therapy, gene editing, and cells as medicines and to help dispel common misconceptions,” said Stewart Parker, former CEO of Targeted Genetics and board chairperson for the ARM Foundation. “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.”

Nicole Boice, founder and CEO of Global Genes, publisher of Rare Daily, serves on the ARM Foundation board of directors.

June 6, 2018
Photo: Janet Lynch Lambert, CEO of ARM

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