VIDEO: Hypertrophic Cardiomyopathy Association has helped advance HCM care

Lisa Salberg, founder and CEO of the Hypertrophic Cardiomyopathy Association (HCMA), spoke with Cardiovascular Business on how the organization she created has helped advance HCM care. As an HCM patient, she explains how the disease has impacted her and what motivated her to become a nationally recognized spearhead for HCM patient advocacy. The group has been involved with the creation of HCM Centers of Excellence, working on legislation to expand screening of children for the hereditary disease, and has been involved in recruiting efforts for new drug trials.   

The HCMA provides information, support and advocacy for patients and the medical community on HCM. Salberg said the organization also helps connect HCM patients with proper care, including HCM Centers of Excellence located around the country, and to raise awareness about the treatments now available. Its large database of patients also might be leveraged potentially for future clinical trials to rapidly gather the numbers of patients needed to properly power studies.