LVADStrong Patient Support Organization, Inc.

At A Glance

Location: 

Boston, Massachusetts

Primary Issue Area:

  • Living Economies

Active since:

2025

Our Purpose

LVADStrong was formed to ensure that people living with ventricular assist devices, and the caregivers who support them, are not invisible within the system that keeps them alive.Our goal is to elevate the lived experience of LVAD patients and caregivers in a way that improves understanding, empathy, and trust across clinical care, community support, and professional education. While LVADs are highly technical, life sustaining devices, the human experience of living with one is often overlooked, minimized, or spoken for by others.We exist because patients and caregivers repeatedly told us they felt isolated, unprepared, and unheard once they left the hospital. Many struggle not only with complex medical regimens, but also with mental wellbeing, identity changes, and the emotional weight of long term dependence on life support. Caregivers experience similar strain, often without support.LVADStrong works to close these gaps by creating spaces where patient and caregiver voices are heard directly and respectfully. Our efforts focus on peer connection, education grounded in lived experience, community outreach, and collaboration with clinicians and healthcare organizations. We do not provide medical advice or replace clinical care. We aim to complement it by bringing the human side of LVAD life into clearer view.This work is about dignity, empathy, and making sure that people living with advanced cardiac devices are treated not just as patients, but as whole human beings.