By: Lisa Salberg, Chief Executive Officer and Founder 

What is your organization’s mission?

The Hypertrophic Cardiomyopathy Association (HCMA) was founded in 1996 as a 501(c)(3) nonprofit organization. We provide support, advocacy, and education to patients, families, the medical community, and the public about hypertrophic cardiomyopathy and all thick heart muscle disorders, while supporting research and fostering the development of treatments. 

We support the creation of high-volume Center of Excellence care models to ensure all the needs of the HCM patient community are met at the highest possible level. We believe in improving global awareness of the risks of this genetic heart disease and ensuring disease understanding and treatments are improved until the ultimate eradication of the disease itself. 

Tell us about the communities you serve.

We serve over 20,000 families with hypertrophic cardiomyopathy (HCM). HCM is a genetic disease in which the heart muscle becomes thick, making it harder to pump blood. Although HCM impacts 1 in 250 people, a large percentage of these patients are undiagnosed, leaving them at risk for severe complications such as atrial fibrillation, stroke, heart failure, and, most alarmingly, sudden cardiac death.  

What are your organization’s main programs or the issue areas you focus on?

We have been serving the HCM community for almost 30 years, and our programs have evolved over that time. One that has remained consistent and central to our mission is providing free intake and navigation services to help patients understand their individual anatomy, guide them as they make critical decisions in their care, and assist them in getting to expert-level care at an HCMA Recognized Center of Excellence. Other support programs we offer include weekly discussion groups, monthly educational webinars, weekly podcasts, a very active private Facebook group, and an annual patient meeting.  

In addition to direct patient services, we are also deeply committed to advancing awareness, education, and research in HCM. We offer continuing medical education (CME) opportunities, participate in clinical trial recruitment, and advocate on the state and federal levels for public policies that benefit the HCM community, including the importance of high-quality generic drugs. Our All Hearts Collaborative is a health equity initiative that aims to promote earlier diagnosis and improve standards of care for HCM patients from underserved communities.  

Through all of these efforts, we aim to improve the quality of life and outcomes for those affected by HCM and to ensure that every patient has access to knowledgeable, compassionate, and comprehensive care. 

How does your work relate to the National Health Council’s mission and the work of our members? 

HCMA’s work directly supports the NHC’s mission to advance health equity, amplify patient voices, and ensure meaningful access to care for people with chronic conditions. Through the Lori Fund, we help patients with financial need travel to Centers of Excellence, removing this common barrier to expert HCM care. We elevate the patient voice in regulatory conversations, having hosted an xeternally led Patient-Focused Drug Development (PFDD) meeting in 2020, with another planned for 2026. Our HCM patient registry goes beyond clinical metrics to collect real-world data and quality-of-life insights directly from patients, ensuring that the registry reflects what matters most to those living with the condition. On the policy front, we’ve held two federal Hill Days and legislative briefings, and we’re working at the state level to pass the Children’s Cardiac Safety Act, which mandates family heart history screening at well-child visits to promote earlier diagnosis. These efforts embody the NHC’s call for patient-centered, equity-driven health care transformation. 

How does the founding or origins of your organization influence your work today? 

The origins of the HCMA are deeply personal, and they shape everything we do to this day. I founded the organization in 1996 in memory of my sister, Lori, who died suddenly from mismanaged HCM at just 36 years old. But HCM has affected my family for generations. My grandfather, uncle, father, and great-aunt all died from complications of this disease, and my daughter, niece, nephew, and three great-nieces and nephews live with it too. I was diagnosed at 12, had a stroke at 21, received an implantable cardioverter-defibrillator (ICD) in my 20s, and eventually needed a heart transplant in 2017. This isn’t just professional for me—it’s my life. 

From day one, the HCMA has been about keeping families whole as long as possible. No family should ever have to face this diagnosis alone. I started the organization driven by grief while working full-time and raising my newborn daughter and my sister’s children. Today, everything we do—from free navigation services to advocacy to community building—is rooted in that same mission.  

Hypertrophic Cardiomyopathy Association (HCMA) is a new member of the National Health Council. For more information on NHC membership, please email membership@nhcouncil.org.