2026 EL-PFDD Meeting Polling Questions Genetic Cardiomyopathies

Dear Friends,

This survey is being sent to you as part of a collaboration on an Externally led Patient-Focused Drug Development Meeting (EL-PFDD) with the Food and Drug Administration (FDA). The Hypertrophic Cardiomyopathy Association (HCMA), Amyloidosis Research Consortium (ARC), Friedreich’s Ataxia Research Alliance (FARA), Danon Foundation, Dilated Cardiomyopathy (DCM) Foundation, and Sudden Arrhythmia Death Syndromes (SADS) Foundation have a virtual event scheduled for April 23, 2026.

This EL- PFDD’s goal is to provide a focused understanding of genetic cardiomyopathies, their burdens and impact on daily living, and perspectives on treatments. This EL-PFDD is bringing together organizations that focus on predominantly genetic heart muscle disorders and will be primarily focused on advanced genetically based therapies during this meeting. The survey questions are intended to capture and document individuals’ experiences and lived experiences of impacted individuals and their families/caregivers. We will use this information to create our "Voice of the Patient" report to be submitted to the FDA following the EL-PFDD.

This survey permits anonymous participation; you are not required to provide your name or contact information to participate. You will be given the opportunity to provide contact information if you wish to receive a copy of the final report.

This brief survey should take no more than five minutes to complete. Although your participation in the survey is greatly appreciated, you are under no obligation to complete it. To opt out of completing this survey, exit now or at any time before the survey’s end. You have the option to either submit the survey with your name or anonymously.

Once you have submitted the survey on the final page, you still have the option to withdraw your submission. If you change your mind about participating, you can remove your submission by calling the HCMA office to speak with Ross Hadley at 973-983-7429 or emailing pm@4hcm.org. Be sure to provide your name and email address that you identified on the survey.

HCMA is the organizing party for this project. Ross Hadley, Systems Project Manager, or Linda Montgomery, Director of Client Services. The phone line is staffed 9-7 Monday through Thursday and 9-5 Fridays EST, or email questions to pm@4hcm.org

A Bighearted thank you for your time and attention from the entire steering committee.

Sincerely,
Lisa Salberg

Founder and CEO