News & Updates - Danon Foundation

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.

Danon Foundation: Now a Member of Global Genes March 31, 2026 We’re excited to share that the Danon Foundation is a member of Global Genes and part of its Global Advocacy Alliance!

Women’s Heart Health Action Agenda March 25, 2026 The Danon Foundation is a member of Global Heart Hub’s Women and Heart Network and we are excited to share the Global Heart Hub Women's Heart Health Action Agenda.

EL-PFDD for Genetic Cardiomyopathy Conditions February 24, 2026 The Danon Foundation is working with the Hypertrophic Cardiomyopathy Association (HCMA) on a patient survey to help make the FDA better aware of all types of cardiomyopathy and the lived patient experience.

Looking Ahead in 2026 January 31, 2026 For 2026, we wanted to share a few initiatives that we are working on and would like your feedback.

Your Stories: Meet Nanako January 31, 2026 I am a Japanese female patient with Danon disease that has affected me and my twin sister in very different ways.

A Recap of 2025 January 31, 2026 Amy and I spoke at Rare Disease Day at Rocket, and we were excited to meet Brittany and Micah, who were also guest speakers. We were inspired to see how Micah started Transplant Teenz to support younger transplant community.