Newly Diagnosed You’re not alone

On Getting Diagnosed

“Having a diagnosis has actually helped a lot. She now knows why she always felt so unwell and now feels empowered and has found confidence that she never had before! We want to raise awareness of Danon Disease and improve treatment options and outcomes for patients and their families.”

Joanne Read: You were just diagnosed with Danon: Now what?

On Moving Forward

“We only get one chance at life. A chance to grow up, dream big, find our purpose and make the dreams a reality.”

Jesse Read: Want to share your story? Send us a note!

On Hope and Optimism

“I am hoping to find answers before my symptoms develop or worsen. I am still waiting for a solution for my rare disease, and remain optimistic about technological innovation and advancements in therapeutic options.”

Member of the Danon Community Read: Learn more about how you can contribute to research