Lisa Salberg

Achieving cardiovascular health for everyone globally is the fundamental vision I wholeheartedly share with the World Heart Federation (WHF). For over 30 years, I have dedicated myself, both professionally and personally, to turning science into sound policy for hypertrophic cardiomyopathy (HCM) and other thick-hearted diseases (including cardiac amyloidosis, Fabry disease, and Danon disease, among others) and actively sharing vital medical information across the healthcare ecosystem. I would be honored to contribute to WHF’s work, considering that cardiovascular disease is the largest cause of death globally.

I founded the Hypertrophic Cardiomyopathy Association (HCMA) in 1996 following the tragic passing of my sister from HCM complications. Since then, I have directed this personal loss into building a recognized, comprehensive global network of support, advocacy, education, and research development.

The WHF has developed a powerful global reputation, which can be enhanced by incorporating more community-driven activities aligned with its core goals and missions. I bring a deep passion for true patient-centricity to the WHF’s work, ensuring that the lived experiences and priorities of patient communities remain a focus of the global health agenda. Our shared commitment to advancing global heart health bridges the gap between clinical research and community implementation, creating a more integrated, person-centered approach to cardiovascular care.

As the founder of the largest organization representing “bighearted” spectrum disorders, I bring a wealth of knowledge and proven leadership to the WHF Board. Under my direction, the HCMA has expanded its institutional reach by developing successful platforms, including 65 HCMA Recognized Centers of Excellence (COE), patient education forums, independent Continuing Medical Education (CME) through the HCM Academy, the Elizabeth T. McNamee Legislative Advocacy Committee, and international affiliates across 11 countries through the HCMAi. The HCMA plays a pivotal role in advancing patient care and treatment through novel technologies, surgical techniques, and therapies. HCMA has organized annual Hill Days to bring advocates to speak directly to legislators. I testified before the US Senate Committee on Aging, where I addressed the generic drug crisis and recommended necessary policy changes. I regularly advocate for sound health policy at both the federal and state levels through in-person house visits and provide counsel to inform their health policy based on lived experience, such as the
current debate regarding cardiac screening for student athletes. My cooperative relationships with the medical community and pharmaceutical experts enabled the pivotal Voice of the Patient initiative, which directly informed the historic 2022 FDA approval of the first disease-modifying cardiac myosin inhibitor and enhanced understanding of the needs of genetic cardiomyopathies.

I am experienced in both board service and board development. As an original member of the HCMA Board, I facilitated the transition from a family board to a Governing Board. Board Members consist of patients and others directly impacted by HCM, including clinicians, researchers, pharmaceutical industry representatives, and payors.

My history of engagement, support, education, and impact encompasses a unique skill set for the WHF, ensuring an actively engaged global ecosystem that works efficiently and collaboratively toward our common public health goals.

Lisa Salberg