We are committed to bringing trusted information and resources to the Danon Disease community. There are also many trusted organizations that provide great information that can help you along your journey with Danon Disease. Let us know if you find additional resources that we should consider sharing.
CCF was established in 2002 to meet the critical need for more research and education on pediatric cardiomyopathy. Over the years, CCF has grown into a global community of families, physicians, and scientists focused on improving diagnosis, treatment, and quality of life for children with cardiomyopathy.
The mission of Global Genes is to connect, empower and inspire the rare disease community. Among other things, Global Genes hosts an annual Rare Patient Advocacy Summit, which brings the rare disease community together. It’s a tremendous event that inspires hope and builds community.
The HCMA is the preeminent organization improving the lives of those with hypertrophic cardiomyopathy, HCM, preventing untimely deaths and advancing global understanding.
NORD is a leading patient advocacy organization dedicated to providing support for individuals with rare diseases by advocating and funding research, education and networking among service providers.
Additionally, these Facebook groups provide information and support to those living with Danon Disease: