Voice of the Patient

On November 16, 2015, at the suggestion of the US Food and Drug Administration (FDA), the Amyloidosis Research Consortium (ARC) hosted an externally led Patient-Focused Drug Development meeting to share with the Agency and other stakeholders (e.g. industry) the perspectives of people living with systemic amyloidosis, its impact on their daily lives, and their perspectives on approaches to treating amyloidosis. Learn more about the patient-focused drug development meeting here.

As a result of the meeting, ARC submitted a comprehensive report entitled “The Voice of the Patient” to the FDA in 2016. This is a detailed summary of the patient testimony presented at the meeting. This report will serve a critical function in communicating to both FDA review staff and industry the improvements that patients want and hope to see in their daily lives.

Download a copy of The Voice of the Patient report here.

Watch a short file on the Voice of the Patient.  watch now