Familial Hypercholesterolemia Awareness Day

Founded in 2012 by the Family Heart Foundation (FH Foundation), the Familial Hypercholesterolemia Awareness Day is an annual global initiative taking place on September 24th during National Cholesterol Education Month, spotlighting familial hypercholesterolemia (FH) worldwide. For over a decade, this day has provided an essential platform for education, advocacy, and community mobilization around one of the world’s most prevalent genetic conditions.
The statistics paint a stark picture: 30 million people worldwide have FH, yet only 30% receive a diagnosis. This leaves 21 million individuals unknowingly living with a potentially fatal condition that puts them and their families at risk for premature heart disease, heart attacks, and stroke.
FH is a genetic condition unaffected by diet and its impact is devastating: one in five heart attacks in people under 45 stems from FH1. Early diagnosis offers tremendous hope and proper treatment can reduce heart disease risk by 80%.
The genetic nature of FH makes awareness and screening essential. FH follows a clear inheritance pattern. The children of FH patients have a 50% risk of carrying the same genetic mutation. However, despite this predictable pattern, misdiagnosis remains common, leaving many without proper care.
Understanding Familial Hypercholesterolemia
Familial hypercholesterolemia (FH) is a common life-threatening genetic condition that prevents the body from properly clearing LDL cholesterol – the “bad cholesterol” – from the bloodstream. This malfunction causes cholesterol to accumulate in artery walls, forming dangerous plaque (atherosclerosis) that can trigger heart attacks and strokes, even in young adults and children.
FH results from mutations in three primary genes: LDLR, APOB, or PCSK92. With over 2,000 known variants, the condition manifests in two forms:
- Heterozygous FH (HeFH), inheriting one mutation from one parent;
- Homozygous FH (HoFH), inheriting mutations from both parents and resulting in a rarer but more severe condition.
Affecting 1 in 250 people globally, FH ranks among the most prevalent life-threatening inherited disorders. But the good news is that a simple blood test, combined with family history evaluation, can diagnose FH. The genetic explains why «you never find a person with FH, you find a family», as the Family Heart Foundation emphasizes, underscoring that comprehensive family screening is vital whenever someone receives an FH diagnosis: parents, siblings, and children should get their cholesterol checked as well.
The cornerstone of FH management is early intervention: starting treatment promptly can normalize cardiovascular risk to match that of the general population. Modern medicine offers multiple therapeutic options to achieve safe LDL levels. While healthy lifestyle choices support overall cardiovascular health, they cannot overcome the genetic defect alone and medical treatment remains essential for FH managing.
Through increased awareness, proactive family screening, and access to early treatment, we can dramatically reduce the devastating impact of this genetic condition. Every conversation, every screening, and every diagnosis brings us closer to a future where no family loses a loved one to undetected FH.
This September 24th, join the global movement. As the 2025 FH Awareness Day says: together, we can save more hearts and more families.