The DCM Foundation’s mission is to provide HOPE and support to patients and families living with dilated cardiomyopathy (DCM) through education, research, and advocacy.
Founded in 2017 by a person living with DCM and a renowned heart failure and genetics expert, the DCM Foundation helps families better navigate the complexities of the disease. As a leading voice in the DCM community, we provide information, connection, and support to hundreds of thousands of patients, families, and medical professionals, advancing progress across the DCM community.
We believe that by understanding DCM, seeking specialized care, and addressing genetic risks, patients can achieve significantly better outcomes. Our mission is carried out through three pillars:
- Information and Education: Providing trusted, patient-centered medical information to help individuals understand DCM, learn about treatment options, and to manage the disease long-term.
- Patient and Family Support: Connecting families to specialized resources and peer networks so no one faces DCM alone.
- Genetic Awareness: Leading global efforts to increase awareness and provide direct access to genetic testing for DCM patients and their families.
DCM Foundation Pillars Supporting Our Mission
Pillar 1: Information and Education
Knowledge is power. We provide clear, expert-backed information to help families move from a place of uncertainty to a place of hope and proactive health management. Our website serves as a global resource hub dedicated to every aspect of the DCM journey.
Our Educational Resources Include:
Interactive Learning
Monthly webinars featuring top cardiologists and researchers, attended by patients and families worldwide.
The DCM Newsletter
Monthly updates highlighting the latest research, treatment breakthroughs, news, and community events.
Improved Accessibility
A full Spanish-language version of our website to ensure Spanish-speaking families have equal access to life-saving information.
Practical Information
Multimedia content, patient stories, and practical information covering symptoms, medications, heart devices, emotional well-being, and more.
Pillar 2: Patient and Family Support
Supporting patients and families is at the heart of what we do. We foster connection, learning, and resilience through a multi-layered support network:
Peer-to-Peer Facebook Communities
- We host public and private DCM Facebook Groups where families share stories and support.
- Our numerous Gene-Specific Facebook Groups allow individuals with the same genetic mutation to exchange experiences, discuss research, and support one another.
Interactive Expert Webinars
Our regular sessions with world-class cardiologists and researchers go beyond education. Each webinar features live Q&A, allowing families to ask questions directly of experts in the field.
Patient Resources
Our dedicated support pages provide curated links to insurance and financial assistance, guidance for partnering with your care team, and a glossary of terms to help navigate a diagnosis.
Patient Stories
We feature real-life experiences from our community to inspire hope and provide a practical perspective on navigating life with DCM.
Through these programs and connections, patients and families gain practical guidance and find meaningful support from a community that truly understands the DCM journey.
Pillar 3: Genetic Awareness
The DCM Foundation is the founding leader of the Genetic Cardiomyopathy Awareness Consortium (GCAC), a global initiative dedicated to ensuring every cardiomyopathy patient and their family members understand the role genetics plays in more than 50% of cardiomyopathy cases.
Launched in 2023 with the support of leading cardiomyopathy patient groups and genetic counselors, the Genetic Cardiomyopathy Awareness Consortium (www.geneticcardiomyopathy.org) has grown into a significant international resource that is shared by partners around the globe. The DCM Foundation remains a primary partner in driving awareness and education about genetic cardiomyopathy worldwide.
A Resource for Families and Providers
We provide essential genetic cardiomyopathy education on our website while also connecting people to the in-depth genetic research, resources, and global advocacy available through GCAC.
Gene-Specific Facebook Groups
We offer an expanding network of Facebook communities where individuals with the same genetic mutation can connect, exchange experiences, explore emerging research, and support each other.
Building a Healthier Future
Whether through global advocacy with GCAC or direct access to free genetic testing, we are committed to a future where every DCM patient has the genetic answers they need to better guide their cardiomyopathy care and help protect their family’s future.
Our Reach and Growth
Since our founding, the DCM Foundation has grown into a trusted global resource, connecting hundreds of thousands of patients, families, and medical professionals worldwide. Through educational webinars and expanding online communities, we share reliable information and foster meaningful connections across the DCM community.
Our work is made possible through the support and partnership of dedicated sponsors, patient organizations, and research collaborators who share our commitment to advancing DCM education, care, and research.