Back to posts Looking Ahead in 2026

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

Continuing to Build Our Community – Through partnerships with other patient and advocacy groups, we are working to pool resources in a way that helps support your day-to-day life with Danon. We continue to learn, expand, and share our story of rare disease with the broader heart community. In 2026, we hope to bring our community in a meaningful way. Some of you have reached out already to help us with this, and we will be in touch!

Resources and Information – We are expanding the resources available on our website to provide you and your loved ones with information. Getting a Danon diagnosis is devastating, and we want to support those who are newly diagnosed with accessible and digestible information.

Access to Genetic Testing – Studies show that rare diseases take on average seven years to diagnose. Many with a cardiomyopathy diagnosis are not getting genetic testing. People living with Danon experience challenges on both sides, and that is why we are collaborating to bring greater access to genetic testing and counseling to the Danon community.

Danon Advisory Group – As a rare disease organization, we believe that some of the most helpful information is the lived experience from each of you. A parent/caregiver advisory group is in the works, and we will launch this year. If you are interested in participating, please email jenny@danonfoundation.org.

Females, Females, Females – We know how important it is to support the females in our community. Many of you are diagnosed with Danon or are caring for a loved one with Danon, or both. We recognize this and we continue to advocate for each of you – telling your stories, voicing your needs and challenges, and sharing your courage. This year, we will focus on ways to support you through the Danon Advisory Group and welcome your thoughts.