Friends of the Danon Foundation We are committed to bringing trusted information and support resources to the Danon disease community. We are committed to bringing trusted information and resources to the Danon disease community. There are closed community groups for people living with Danon disease to share their experiences, ask questions and provide support to each other. Many organizations also provide information that can help you along your journey with Danon disease. Danon Community Support Community support is available through these Facebook groups that provide support for those living with Danon Disease. Danon Disease Support Group Danon Disease Advocacy, Support & Education Global Genes 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. Learn more National Organization for Rare Disorders 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. Learn more Global Heart Hub Global Heart Hub is the first global non-profit umbrella organisation of patient organisations and patient advocates to provide a voice for those living with or affected by cardiovascular disease. Learn more Hypertrophic Cardiomyopathy Association HCMA provides support, advocacy, and education to patients, families, the medical community, and the public about hypertrophic cardiomyopathy while supporting research and fostering the development of treatments. Learn more DCM Foundation Formed in 2017 by a DCM Patient and a noted Heart Failure Cardiologist and DCM Genetic Researcher, the DCM Foundation’s mission is to provide HOPE and support to DCM Patients and Families with Dilated Cardiomyopathy through education, research and advocacy. Learn more Children’s Cardiomyopathy Foundation 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. Learn more Clinical Trials Clinical trials are conducted to determine the safety and effectiveness of medicines. Frequently Asked Questions For the Newly Diagnosed Glossary Commonly Used Terms When Navigating Life with Danon Disease Questions for Your Physician Any new diagnosis comes with a lot of questions, especially after you get your initial diagnosis. Danon Disease Specialists Medical Experts and Researchers
Clinical Trials Clinical trials are conducted to determine the safety and effectiveness of medicines.
Questions for Your Physician Any new diagnosis comes with a lot of questions, especially after you get your initial diagnosis.