Hypertrophic Cardiomyopathy Association

Hcma recognized center of excellence program: hypertrophic cardiomyopathy is a complicated diagnosis requiring specialist management strategies. Hcm impacts an estimated one in 250 people in the general population. It is currently significantly underdiagnosed, with only an estimated 150,000 individuals in the united states currently in treatment for the disease. Because several related hcm spectrum disorderssuch as rasopathies, cardiac amyloidosis, fabry disease, and danon diseasecan mimic or overlap with hcm, accurate differential diagnosis is critical to ensure that patients receive the correct treatment and management strategy. Care for hcm required multiple subspecialty care modalities, including but not limited to imaging, cardiology, interventional cardiology, electrophysiology, cardiac surgery, genetics, psychosocial services, and cardiac oversight for noncardiac procedures, including pregnancy, orthopedic issues, and other general medical needs. The hcma has 56 recognized centers of excellence in the united states, with 15 additional centers under review and international programming being developed. Creation of these programs takes relationship building, program building, and administrative support. Patients cared for in this model have better outcomes than those treated in low-volume centers. This program directly leads to patient safety and optimal outcomes.

Patient education bighearted warrior tour program: launched in 2020, this educational series brings together thought leaders in hcm patient care and advocacy to learn collectively, share experiences, and work toward positive change. Since its inception, the program has offered more than 60 webinars and four in-person meetings, covering a wide range of topics including pediatrics, genetics, surgery, and more. These programs are free of charge and ensure that every patient has access to vital educational opportunities, regardless of their geographic location.