August 2026 Newsletter
August 11, 2026
Updates on research, community, and how you can be part of what comes next.
Save-the-Date: Danon Awareness Day – October 24th, 2026
August 11, 2026
Join us virtually as we come together to raise awareness for Danon disease and celebrate our community.
Understanding Cardiomyopathy Podcast: Danon disease
July 21, 2026
Collaboration with Understanding Cardiomyopathy on a Danon disease focused podcast featuring Prof. Juan Pablo Kaski.
Danon Foundation Joins RDI and EURORDIS
June 2, 2026
The Danon Foundation is proud to announce our memberships in RDI (Rare Diseases International) and EURORDIS – Rare Disease Europe.
Your Stories
May 8, 2026
Together, we can show the real and deep impact of Danon disease on our lives – and why greater understanding, research, and treatment options are so important.
April 2026 Newsletter
April 30, 2026
Updates on research, community, and how you can be part of what comes next.
Introducing the Courage Fund
April 14, 2026
We are proud to announce the launch of the Danon Foundation's Courage Fund. This is a new program designed to support the whole-person behind every research journey.
Danon Community Monthly Connect
April 7, 2026
Join us each 2nd Wednesday of the month to connect with other members of the Danon community!
New Research Opportunity at UCSD
April 7, 2026
The team from Dr. Eric Adler’s lab at UCSD has a new research project on Danon disease and we need your help!
Register Today: EL-PFDD on April 23, 2026
April 6, 2026
We're bringing your experience to the FDA (Food and Drug Administration), researchers, biopharma companies, healthcare providers, product developers and federal regulatory partners so they can better understand the perspective of patients living with Danon disease.
