Back to posts Register Today: EL-PFDD on April 23, 2026

Purpose: To bring the patient experience to the FDA (Food and Drug Administration), researchers, biopharma companies, healthcare providers, product developers and federal regulatory partners so they can understand the perspective of patients living with cardiomyopathies – including Danon disease – and why new potential therapies, such as gene therapies, are urgently needed for these conditions.

For more information about this initiative, please see our prior post.

Date and Time: Thursday, April 23rd, 2026, 12-5pm Eastern

How to Participate: If you have a genetic cardiomyopathy condition, you can share your lived experiences with the FDA via a five-minute survey here. We encourage you to attend the meeting. If you are able to attend live, you can participate in polling questions about your health experiences that will help shape the future of new treatments for Danon disease.

Join us virtually!

Register here