Back to posts Share your story living with Danon disease

We are also working a project on our website to share stories about you and your loved ones – and how this disease has affected your life – to raise awareness, honor loved ones, and help others who are just learning about this disease.

Every person living with Danon disease has a story worth telling. 

We 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.). 

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.

Thank you for helping others feel less alone and part of a community.

Share your story