Family Heart Foundation Expands FIND Lp(a)™ Initiative With Seven Major Healthcare System Partnerships to Accelerate Screening and Diagnosis of a Silent Cardiovascular Risk
The Family Heart Foundation, a nationally recognized research and advocacy organization dedicated to advancing the prevention, early detection, and treatment of inherited cardiovascular conditions, has announced a major milestone in its ongoing efforts to transform heart health. Through its flagship FIND Lp(a)™ initiative, the foundation has secured new partnerships with seven prominent healthcare systems across the United States. This collaboration aims to accelerate the detection of elevated lipoprotein(a), or Lp(a)—a genetic risk factor for heart disease and stroke that remains widely underdiagnosed despite its prevalence.
The organizations joining forces with the Family Heart Foundation include some of the nation’s most respected medical institutions: Emory Healthcare, Indiana University Health, Johns Hopkins University, the Medical University of South Carolina, OhioHealth, Stanford Health Care, and the University of South Florida. Together, these institutions represent a broad and diverse network of clinical expertise, patient populations, and implementation models. Their shared commitment marks a significant advancement in reshaping how health systems approach cardiovascular risk screening.
Why Elevated Lp(a) Matters
Lipoprotein(a), often abbreviated as Lp(a), is a cholesterol-rich particle in the blood that closely resembles LDL cholesterol, commonly known as “bad cholesterol.” Unlike traditional cholesterol measures, however, Lp(a) levels are determined primarily by genetics and cannot be modified significantly through diet, exercise, or commonly prescribed lipid-lowering therapies. Elevated Lp(a) increases the risk of atherosclerotic cardiovascular disease (ASCVD), including heart attacks, strokes, and peripheral artery disease.
What makes Lp(a) particularly dangerous is its silent nature. Individuals with elevated levels may have no symptoms until a serious event occurs. Despite affecting an estimated one in five people worldwide, fewer than 5% of individuals with elevated Lp(a) are aware they have it. This means millions of people may unknowingly carry a heightened risk of cardiovascular events that could potentially be mitigated with earlier detection, monitoring, and tailored care strategies.
Dr. Julie Clary, MD, MBA, Vice Chair for Clinical Affairs in the Department of Medicine and clinical lead for the Indiana University Health FIND Lp(a) team, emphasized the importance of expanding screening:
Elevated Lp(a) affects one in five individuals, yet unfortunately, most of those individuals are undiagnosed. Not knowing you have a condition is not the same as not having that condition. Increasing awareness really does save lives.
The FIND Lp(a)™ Approach
The FIND Lp(a)™ initiative—short for Flag, Identify, Network, and Deliver™—represents the Family Heart Foundation’s systematic, innovation-driven strategy to close the diagnostic gap. Supported by Novartis Pharmaceuticals Corporation, the program leverages advanced machine learning models to identify individuals with existing cardiovascular disease who may be at heightened risk of a secondary heart attack or stroke due to unrecognized elevated Lp(a).
The process begins with flagging individuals based on clinical data patterns that suggest elevated risk. These individuals are then encouraged to undergo a simple blood test to measure their Lp(a) levels. From there, the initiative facilitates coordinated care through clinical teams and healthcare networks, ensuring that patients not only receive a diagnosis but also are connected to follow-up care and ongoing support.
By embedding this process within large healthcare systems, FIND Lp(a) creates a scalable and replicable model for widespread adoption. Each healthcare partner employs customized strategies, guided by the principles of implementation science, to effectively engage clinicians, integrate workflows, and encourage patient participation. Importantly, lessons learned from one system are rapidly shared across the collaborative network, ensuring best practices spread quickly and efficiently.
Tackling the Challenge of Implementation
Integrating new screening practices into complex healthcare systems is never straightforward. Challenges include adjusting electronic health record systems, aligning clinician workflows, educating providers, and engaging patients who may not be familiar with Lp(a) as a risk factor.
The FIND Lp(a) initiative addresses these hurdles head-on by creating a proactive framework. Rather than waiting for clinicians or patients to request an Lp(a) test, the program uses predictive analytics to proactively identify at-risk individuals. This approach transforms screening from an optional add-on into a core component of cardiovascular care.
As part of this process, partner healthcare systems are actively working on outreach campaigns, clinician training modules, and patient engagement programs. The goal is not only to expand testing but also to foster awareness—educating patients that elevated Lp(a) is both common and serious, and that knowing their Lp(a) status can be lifesaving.
Voices From the Partnership
For the Family Heart Foundation, the partnerships signify a major step toward achieving its mission of making inherited cardiovascular risk factors visible, diagnosable, and manageable.
Katherine Wilemon, founder and CEO of the Family Heart Foundation, highlighted the urgency of the initiative:
While elevated Lp(a) is a common and serious risk factor for atherosclerotic cardiovascular disease, fewer than 5% of individuals living with it are aware. The FIND Lp(a) initiative seeks to close this gap in diagnosis and appropriate care. The Family Heart Foundation and our health system partners are committed to leading the way in addressing elevated Lp(a) as the most common, yet under-diagnosed risk factor for early cardiovascular disease.
The emphasis on both awareness and action is central. As more individuals are screened and diagnosed, they gain access to comprehensive cardiovascular risk reduction strategies. This may include closer monitoring, more aggressive management of other risk factors such as hypertension and diabetes, and enrollment in clinical trials for emerging therapies specifically targeting Lp(a).
Building a Collaborative Learning Network
One of the most powerful aspects of the initiative is the collaborative learning network that connects all participating health systems. By sharing insights in real time, the network accelerates the adoption of best practices and reduces redundancy. For instance, if one system develops an effective clinician engagement strategy, others can replicate it quickly, eliminating delays in scaling up the program.
This collaborative approach also ensures that patients benefit regardless of where they receive care. Whether at Stanford Health Care on the West Coast, Johns Hopkins University in the Mid-Atlantic, or OhioHealth in the Midwest, patients can expect a consistent, high-quality approach to Lp(a) screening and follow-up.
What’s Next for FIND Lp(a)?
As the initiative grows, the Family Heart Foundation envisions expanding beyond the current seven systems to reach even more institutions nationwide. With each new partnership, the network’s capacity to identify and support at-risk individuals expands exponentially.
In the future, the foundation anticipates that routine Lp(a) testing could become a standard part of cardiovascular risk assessment, much like cholesterol and blood pressure measurements today. Such a shift would represent a paradigm change in preventive cardiology, allowing millions to know their risk earlier and take steps to protect their heart health.
The broader vision also includes patient empowerment. Individuals identified with elevated Lp(a) are not only guided into appropriate care pathways but also invited to join the Family Heart Foundation community, where they gain access to education, advocacy, and peer support.
