Back to posts Your Stories
Published on May 8, 2026
Every person living with Danon disease has a story worth telling.
We are working on a project to share your stories for the Danon Foundation website, and invite you to share your story, no matter where you are in your journey (new diagnosis, caring a loved one, navigating day-to-day life, transplant, etc.).
By sharing your experience with Danon disease, you are helping to raise awareness, support others on a similar journey, and create connections. 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.
Submit your storyThank you for helping others feel less alone.
Your privacy and preferences matter. We will only use your story in what you consent to. You may request to update or withdraw your story at any time by contacting us at contact@danonfoundation.org.