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For Patient Organization Leaders - Healing Genes
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Patient Organization Toolkit

Dear Patient Organization Leader,

The ARM Foundation for Cell & Gene Medicine wants to partner with you. Your unique expertise, personal insights and reach to patients can increase awareness and understanding of cell and gene medicine in the disease or disorder communities.

For that reason, we are pleased to provide you with Understanding Cell & Gene Medicine,  a PowerPoint presentation for you to use and modify for your unique needs as an advocate and educator.  Found at the bottom of this page, the PowerPoint presentation is paired with Understanding Cell & Gene Medicine: Guidance to enrich your understanding.  You can download the Guidance, provide it to others as a pdf, or read the Guidance here.

The powerpoint can be customized with your logo and name for presentation to your disease communities and communication platforms. 

The toolkit materials are

  • based on input from a patient advisory panel and dozens of patient group leaders
  • carefully vetted by science and medical experts, patients and caregivers
  • provided for free and unrestricted use to support your organization’s cell and gene medicine education efforts
Enabling Informed Decisions

Patients say their biggest concern about exploring a specific gene medicine is being able to make an informed decision about their care. 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.  Cell and gene medicine science has moved at an unprecedented pace in the past few years, and researchers have worked tirelessly to harness new tools and technologies for human therapeutic use.  

Patients and caregivers want to make informed decisions about their care. And you, as a patient organization leader, can be equipped to inform them with the right resources from the ARM Foundation for Cell & Gene Medicine.

As scientists race toward potentially curative therapies, we feel encouraged and inspired to partner with you to engage and inform patients, caregivers and other stakeholders about cell and gene medicine.

Please contact me at [email protected] with any questions or other issues related to cell and gene medicine education.

Regards,

Jennifer Briggs Braswell, PhD

Senior Advisor

ARM Foundation for Cell & Gene Medicine