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New foundation will increase awareness about cell and gene therapy, but caution is recommended

The Alliance for Regenerative Medicine (ARM) announced the launch of the ARM Foundation for Cell and Gene Medicine, which will be 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.

Cell and gene medicine may produce life-changing therapies for patients suffering from incurable diseases and conditions, including Alpha-1 Antitrypsin Deficiency (Alpha-1).

“We applaud the Alliance for Regenerative Medicine’s efforts to educate and empower the public on gene and cell therapy. This is very timely as we now have several approved gene therapies, and there are many more in clinical trials, including several for Alpha-1,” expressed Jean-Marc Quach, president and CEO of The Alpha-1 Project (TAP), the wholly owned for-profit venture philanthropy subsidiary of the Alpha-1 Foundation.

However, while the Alpha-1 Foundation salutes ARM’s goal of promoting evidence-based research for the development and clinical application of gene-and stem cell therapies, the Foundation believes that patients should be skeptical about gene-and stem cell tourism until the efficacy and safety of such therapies have been established in approved clinical trials. A statement by the Alpha-1 Foundation’s Medical and Scientific Advisory Committee (MASAC) to this effect was published on October 15, 2015.

The idea of the new ARM Foundation for Cell and 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.

“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.”

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. 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. (2)

Planned program activities and content for the ARM 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 ARM 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 ARM Foundation for Cell and Gene Medicine, please click here.

For further information about the launching of this initiative, click here.


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