Hypertrophic Cardiomyopathy Association

Hcma recognized center of excellence programhypertrophic Cardiomyopathy is a complicated diagnosis requiring specialty management strategies. Hcm impacts an estimated one in 250 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. Care for hcm requires multiple subspecialty care modalities including but not limited to imaging cardiology, interventional cardiology, electrophysiology, cardiac surgery, genetics, psychosocial services, and cardiac oversight for non-cardiac procedures, including pregnancy orthopedic issues and other general medical needs. The hcma has 50 recognized centers of excellence programs in the united states, with 17 under review and international programming being developed. Creation of these programs takes relationship building, program evaluation 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.

Hcma patient intake and navigation servicesthe hcma allows each individual diagnosed with the condition to contact the office (phone, email , in person, or online through video conferencing) and participate in an intake call, which then allows for understanding where the individual is coming to us regarding their disease process, access to specialty care, emotional support, advocacy services, and more. This is a very labor-intensive portion of our work, requiring individual communication and follow-up. We have used this model of service since our founding in 1996 it has evolved as the organization has, and to date, 20,000 individuals have participated in the process.

Patient education bighearted warrior webinar programin 2020, we moved to a virtual education model, which has now spanned nearly four years with over 30 segments of educational material created. Each webinar is organized by either the hcma-recognized center or the subtopics such as pediatrics, genetics, or other similar topics. These programs are free to all and have provided an educational opportunity regardless of geographic location. These programs are held typically monthly and sometimes more often than that.

Other programs including clinical trials, community engagement, other client and partner services