Articles from Family Heart Foundation

To kick off Super Bowl LX week and American Heart Month, the Family Heart Foundation, a leading research and advocacy organization, is teaming up with three-time Pro Bowler and former Seattle NFL quarterback Matt Hasselbeck to launch a national campaign focused on raising awareness of high cholesterol as a key risk factor for heart attack and stroke. The campaign, “Tackle Cholesterol: Get into the LDL Safe Zone,” reinforces the importance of early screening for dangerous cholesterol levels and helps individuals understand the steps to protect themselves and their families from cardiovascular disease. Research shows that to be in the LDL Safe Zone individuals need to lower their high low-density lipoprotein (LDL) cholesterol and keep it low in accordance with individual risk guidelines. Hasselbeck, who was diagnosed with high LDL cholesterol last year, and has a family history of cardiovascular disease, will help reach families and sports fans nationwide with an opportunity for a free at-home screening, educational resources and support.

The Family Heart Foundation, the leading research, education and advocacy organization focused on genetic dyslipidemias, today announced it will share key research findings and data at the 2025 American Heart Association Scientific Sessions in New Orleans on November 7-10. Family Heart Foundation experts will lead poster and oral presentations that highlight novel strategies to accelerate identification of familial hypercholesterolemia (FH), improve diagnosis of FH, and opportunities to improve cholesterol management in individuals with Atherosclerotic Cardiovascular Disease (ASCVD). Family Heart Foundation presentations include:

The Family Heart Foundation, the leading research, education and advocacy organization focused on genetic dyslipidemias, has launched the Lp(a) AW(a)RETM initiative to engage key U.S. healthcare stakeholders in advancing awareness, screening and diagnosis of high Lipoprotein(a) – also known as Lp(a). It is estimated that approximately 20% of the U.S. population has a genetic mutation for high Lp(a), yet only 1% in the general population, and 2% with established atherosclerotic cardiovascular disease (ASCVD), have been tested for Lp(a).

The Family Heart Foundation, a leading research and advocacy organization, announced the online publication of recommendations from a multidisciplinary panel in the Journal of Pediatrics to promote the early identification of children living with familial hypercholesterolemia (FH). A common life-threatening genetic condition that causes high cholesterol from birth, FH can lead to premature heart attacks and heart disease if it is not diagnosed until adulthood. Despite national guidelines established in 2011 by the National Heart, Lung and Blood Institute (NHLBI) and the American Academy of Pediatrics (AAP), the prevalence of pediatric universal lipid screening remains low, leaving the majority of affected children in the United States at high risk of heart disease decades earlier than those who have not inherited the condition.

The Family Heart Foundation, a leading research and advocacy organization, announced a pivotal milestone in its FIND Lp(a)™ initiative designed to catalyze healthcare system screening of elevated lipoprotein(a) [Lp(a)], a common yet underdiagnosed inherited risk factor for heart disease and stroke. Seven healthcare systems including Emory Healthcare, Indiana University Health, John Hopkins University, Medical University of South Carolina, OhioHealth, Stanford Health Care, and University of South Florida have joined the Family Heart Foundation as partners in the FIND Lp(a) Initiative.

The Family Heart Foundation® today announced the launch of Cholesterol Connect®, a groundbreaking program that combines free at-home lipid screening with the power of the Family Heart Care Navigation® Center, which provides live, personalized support to help people understand and learn how to reduce the risk of cardiovascular disease (CVD). Elevated Lipoprotein(a) (Lp(a)) and LDL-Cholesterol (LDL-C, referred to as “bad” cholesterol), powerful instigators of CVD that affect millions of Americans, often go undiagnosed, leaving individuals at a significantly higher risk for heart attacks and strokes. At-home screening and access to virtual Care Navigation is open to the public; insurance is not involved. Cholesterol Connect® is sponsored in part by Amgen.

Today, the Family Heart Foundation®, a leading research and advocacy organization, announced the successful completion of the Flag, Identify, Network and Deliver™ “FIND Lp(a)” machine learning model – a first-of-its-kind offering being implemented in care delivery systems across the United States. This program utilizes a machine learning model to identify people who are likely to have elevated Lp(a) which is present in approximately 20% of people globally. Lipoprotein(a), also known as Lp(a), is an inherited condition that increases cardiovascular disease risk. It causes inflammation, clotting, and clogging in the vascular system throughout the life of an affected person, leading to premature cardiovascular disease and death. The Family Heart Foundation has partnered with a group of large health systems spanning across the United States to implement the FIND Lp(a) machine learning model, an initiative sponsored by Novartis. This model is used to pinpoint individuals whose early or aggressive cardiovascular disease may be accelerated by a genetic condition, elevated Lp(a).

A new study published in Circulation: Cardiovascular Quality and Outcomes from the Family Heart Foundation — a patient-centered research and advocacy nonprofit organization dedicated to improving the lives of families impacted by inherited lipid disorders and LDL-cholesterol — revealed that utilization of proprotein convertase subtilisin/kexin type 9 inhibitors (PCSK9i) to reduce low-density lipoprotein cholesterol (LDL-C) remains low among high-risk patients. Despite key developments between 2017 and early 2019 that were expected to increase appropriate utilization, rejection of prescribed PCSK9i by insurance plans remains uncharacteristically high compared to other similar therapies for cardiovascular and metabolic disease. Since 2019, PCSK9i have had a label expansion; positive results from major outcomes trials and large studies showing the use of PCSK9 inhibitors reducing cardiac events; a 60% price reduction on PCSK9i and established clinical practice guidelines all of which were supposed to improve utilization, yet access is still a barrier leaving patients at risk for heart attacks and strokes.

Today, the Family Heart Foundation, a leading research and advocacy organization, launched the FIND Lp(a)™ program to accelerate the adoption of lipoprotein(a) [Lp(a)] screening and appropriate management in patients with cardiovascular disease, including those who traditionally are under-represented in healthcare. Elevated Lp(a) is the most common inherited risk factor for heart disease and stroke. The cutting-edge FIND Lp(a) program, supported by Novartis, is based on the Family Heart Foundation’s innovative Flag, Identify, Network and Deliver™ Initiative. The program harnesses the synergy of machine-learning and implementation science to empower patients and their medical team with actionable insights into their genetic risk of elevated Lp(a) and facilitate appropriate care.

A new study from the Family Heart Foundation, a leading research and advocacy organization, showed the diagnosis and treatment of homozygous familial hypercholesterolemia (HoFH) is delayed, and often occurs after a heart attack or early atherosclerotic cardiovascular disease (ASCVD). HoFH is a rare disease and is the most severe form of the common inherited genetic disorder called familial hypercholesterolemia (FH). HoFH leads to severely elevated low density lipoprotein cholesterol (LDL-C) from birth onward. While some with the highest LDL-C are diagnosed with HoFH in childhood, many others are missed, denying them the opportunity for timely initiation of aggressive lipid-lowering therapies (LLT) and resulting in premature cardiovascular disease. The new study was published online in the Journal of the American Heart Association (JAHA).

A real-world, retrospective analysis by the Family Heart Foundation, a leading non-profit research and advocacy organization, found that high-risk Americans who do not maintain levels of LDL-cholesterol (LDL-C) recommended in the 2018 American College of Cardiology/American Heart Association cholesterol treatment guidelines, had a 44% higher rate of cardiovascular events compared to those who did achieve and maintained recommended LDL-C levels. The study findings, which were based on data from the Family Heart Database™ of more than 300 million Americans, will be highlighted this week in a poster presentation at the Academy of Managed Care Pharmacy (AMCP) Conference at the Henry B. Gonzalez Convention Center in San Antonio.

According to a new study from the Family Heart Foundation, a leading research and advocacy organization, 72.2% of high-risk hypercholesterolemia patients never achieve the low-density lipoprotein-cholesterol (LDL-C) thresholds recommended in the 2018 American College of Cardiology/American Heart Association Guideline on the Management of Blood Cholesterol. This may be due to a lack of physician prescribing, insurance coverage and patient follow through, despite the known risk of cardiovascular disease. Based on real-world data from an analysis of the Family Heart DatabaseTM of more than 300 million Americans, the findings will be highlighted in a poster presentation at the American College of Cardiology 2023 conference on March 4, 2023 at 12:45 pm at the Ernest N. Morial Convention Center in New Orleans (Poster Hall – Hall F).

Doctors from the Emory Heart & Vascular Center are joining forces with the Family Heart Foundation, a leading research and advocacy organization, to find and more widely treat undiagnosed patients living with a common genetic condition that causes very high levels of unhealthy cholesterol, heightening the risk for heart attacks and strokes even at a young age.

The Family Heart Foundation, a leading research and advocacy organization, shared results from an analysis of its large U.S. Family Heart DatabaseTM showing significant disparities exist in the treatment of familial hypercholesterolemia (FH) among racial groups, and by income and education levels. A real-world data analysis of more than 300 million individuals showed appropriate lipid-lowering therapy is more often prescribed for people with FH who are White, male, and have higher income, or have advanced education, leaving many others undertreated. The findings are being presented at the American Heart Association Scientific Sessions on Nov. 7 in Chicago in a poster titled, “Using Healthcare Claims Data and Machine Learning to Identify Health Disparities for Individuals with Diagnosed and Undiagnosed Familial Hypercholesterolemia.”

The Family Heart Foundation, a leading research and advocacy organization, shared results from an analysis of patients in its CASCADE FH® Registry showing that children with homozygous familial hypercholesterolemia (HoFH) are diagnosed earlier and have much higher untreated low-density lipoprotein cholesterol (LDL-C) than adults with HoFH. The data raises the possibility that only children with the most severe cases of HoFH are being diagnosed early. In addition, others who may have somewhat lower LDL-C are not identified early and miss out on decades of life-saving treatment, which could lead to heart disease earlier in life. The findings were presented in a poster titled, “Characterization of Children with Homozygous Familial Hypercholesterolemia from the CASCADE FH Registry,” at the American Academy of Pediatrics (AAP) National Conference & Exhibition on Oct. 7-11 in Anaheim, Calif.

The Family Heart Foundation, a leading research and advocacy organization, completed an analysis of its large U.S. Family Heart DatabaseTM showing that while the percentage of patients diagnosed with familial hypercholesterolemia (FH) has increased substantially since 2016, most remain undiagnosed. The data is being presented in a poster titled, “Diagnosis of Familial Hypercholesterolemia: A Work in Progress,” at the American Society for Preventive Cardiology Congress on CVD Prevention on July 29-31 in Louisville, Kentucky.

The Family Heart Foundation, a leading research and advocacy organization, completed an analysis of its large U.S. Family Heart DatabaseTM demonstrating that lipoprotein(a) – also referred to as Lp(a) — is rarely assessed, despite it being a common, independent risk factor for atherosclerotic cardiovascular disease (ASCVD). Of the 112 million individuals for whom data was analyzed, only 0.3% had at least one Lp(a) measurement. The data is being presented in a poster titled, “Characterization of Lp(a) Measurement in a Large U.S. Health Care Dataset,” at the National Lipid Association Scientific Sessions on June 3 at 11:25 CT in Scottsdale, Arizona.

The Family Heart Foundation, a leading research and advocacy organization, today announced study results that demonstrate individuals with elevated lipoprotein(a) – also referred to as Lp(a) —levels experience an increased rate of cardiovascular events. While average Lp(a) levels may vary among racial and ethnic groups, the Lp(a) level appears to be the main driver of risk. The results are being highlighted in a poster presentation titled, “Real-World, Observational Study of Elevated Lp(a) and Cardiovascular Events,” at the 90th European Atherosclerosis Society Congress being held May 22-25 in Milan, Italy.

Following a decade of success as the Familial Hypercholesterolemia Foundation, the organization recently expanded its mission and changed its name to the Family Heart Foundation. With a broadened focus, the Family Heart Foundation will drive awareness about, advance scientific understanding of, and empower patients and their families living with familial hypercholesterolemia (FH) and now, elevated lipoprotein(a) — also known as Lp(a).