Back to posts A Recap of 2025

Published on January 31, 2026

Rare Disease Day

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.

For 2026, Micah was chosen to represent the United States for World Rare Disease Day. Thanks for all the work you do to represent Danon disease and the transplant community!

Your stories that you shared with Amy were part of this day and a powerful message to reiterate how our community continues to advocate and hope for treatments for Danon disease.
Amy shared her story on Rare Disease Day at the New York Stock Exchange

Updates to Our Website – Support for the Newly Diagnosed

In November, we updated our website to provide more resources, especially for the newly diagnosed, in an easily accessible way. We also launched our resources directory to provide a one-stop place for Danon research.

We will continue to update in 2026 with more information and resources. If you have feedback or resources you think should be shared with our community, email us at contact@danonfoundation.org

Advocacy Collaborations and Non-Profit Partnerships

We continued to build work with other organizations in the cardiomyopathy space  to help bring more resources to our community, as well as spread the word about Danon disease.

A special thank you to the DCM Foundation and Genetic Cardiomyopathy Awareness Consortium (GCAC) for collaborating with us and Dr. Joe Rossano on this video explaining Danon disease.

Working with GCAC, we helped launch free genetic testing for people with cardiomyopathy and their immediate family members. For more info, visit this page.

As a US-based organization, the Danon Foundation became an affiliate of the Global Heart Hub and its Cardiomyopathy Patient Council to expand our resources to the global community. We were proud to be a supporter of the Think Cardiomyopathy campaign in 2025.

In the 2nd half of 2025, we represented Danon disease both at the Global Heart Hub Cardiomyopathy Council Meeting in Madrid, Spain, as well as the HCMA Patient Meeting in Morristown, NJ.

Danon Voices in Advancing Research and Development

We continue to work with industry partners in healthcare, biotech and pharma to provide feedback from all of you on living with Danon disease, getting genetic testing, participating in clinical studies, and more broadly, the needs of our community.