What is FH?

Familial hypercholesterolaemia (FH) is one of the most common inherited metabolic disorders, affecting approximately 1 in every 300 people worldwide.[1] It is a genetic condition that causes lifelong elevated levels of low-density lipoprotein cholesterol (LDL-C), often referred to as "bad cholesterol."

The accumulation of LDL-C from birth, leads to the gradual development of atherosclerosis the build-up of fatty deposits (plaque) within the artery walls. Without early diagnosis and appropriate treatment, this significantly increases the risk of premature atherosclerotic cardiovascular disease (ASCVD), such as heart attacks or strokes.

FH exists in two forms: 

  • Heterozygous familial hypercholesterolaemia (HeFH) – inherited from one parent and the more common form of FH.
  • Homozygous familial hypercholesterolaemia (HoFH) – inherited when both parents pass on an FH-causing genetic variant. HoFH is rare, more severe, and requires early diagnosis, and specialised treatment, often beginning in childhood. Learn more

The good news is that early diagnosis and lifelong management can dramatically reduce cardiovascular risk, allowing people living with FH to lead healthier lives.

FH Awareness Day

Uniting for FH Awareness Day on 24th September

At FH Europe Foundation, we believe that awareness saves lives.

FH Awareness Day brings together people living with FH, patient organisations, healthcare professionals, researchers, policymakers and advocates around the world to increase understanding of this common inherited condition and promote earlier diagnosis and better care.

Together, we aim to help people understand the important difference between genetically inherited high LDL cholesterol (FH) and high cholesterol related to diet or that develops later in life.

Through our international network, educational campaigns, and social media community, we encourage everyone to become part of the movement to improve awareness, support earlier detection, and advocate for equitable access to appropriate care.

Every conversation, every shared story, and every post has the potential to help someone receive a life-changing diagnosis.

Why do we need FH Awareness Day?

Despite being one of the most common inherited conditions, FH remains significantly underdiagnosed and undertreated worldwide.

FH Awareness Day helps raise awareness about the importance of recognising inherited high LDL-C early, so that treatment can begin before ASCVD develops.

Why early detection matters

  • Approximately 1 in every 300 people worldwide has FH.[1]
  • Millions of people remain undiagnosed, meaning they are unaware of their increased lifetime risk of cardiovascular disease.[2,3]
  • People living with FH are exposed to elevated LDL cholesterol from birth, making early diagnosis essential.[2]
  • Every person diagnosed creates an opportunity to identify additional affected family members through cascade screening.[2]

What can you do?

Raise awareness and start the conversation:

  • Learn what FH is and why it matters.
  • Talk to your family about heart health and family history.
  • If you or a close relative has very high LDL-C or early heart disease, ask a healthcare professional whether FH could be a possibility.
  • Share reliable information to help others recognise the signs of FH.
  • Support awareness efforts by connecting with your local FH patient organisation.

Together, we can ensure that more people receive an early diagnosis, timely treatment, and the opportunity to live healthier lives. 

Social Media Toolkit

You can download the various resources below:

Every post helps increase awareness and encourages more people to learn about FH.

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Resources

You can find further patient friendly content provided in the webinars we have hosted over time regarding FH.

What is Cholesterol?
What is FH?
The role of family and family care in FH
What about FH and pregnancy, breast feeding, and menopause?
First line of treatment in FH
FH early screening saves lives and is cost effective! Is this enough?
Misdiagnosis and Gender Bias in Women with FH
FH Paediatric Screening. WHAT?
Understanding your lab result.
The importance of FH screening in the context of the CVH Plan
Understanding the Connection Between Obesity and Diabetes in FH
Understanding the Differences between High Cholesterol and FH

FHEF and EAS joint webinars (eas-society.org)

  • Importance of Measuring Lp(a) in patients with HeFH & HoFH  - Watch Here
  • Access to Treatment for HeFH and HoFH -  Watch Here
  • Genetics in HeFH and HoFH: the latest insights - Watch Here
  • Challenges for Children with FH - Watch Here
  • Screening: experience from cascade screening, universal screening and latest insights on screening on the EU level - Watch Here

[Last updated 12 August 2026; content co-developed with patients and reviewed by scientific advisory committee members Prof. Jeanine Roeters van Lennep and Prof. Samuel Gidding]

References

[1] Beheshti SO, Madsen CM, Varbo A, Nordestgaard BG. Worldwide Prevalence of Familial Hypercholesterolemia: Meta-Analyses of 11 Million Subjects. J Am Coll Cardiol. 2020 May 26;75(20):2553-2566. doi: 10.1016/j.jacc.2020.03.057. PMID: 32439005.

[2] Bedlington N, Abifadel M, Beger B, et al. The time is now: Achieving FH paediatric screening across Europe - The Prague Declaration. GMS Health Innov Technol. 2022;16:Doc04. doi: 10.3205/hta000136. PMID: 36311985; PMCID: PMC9583732.

[3] Nordestgaard BG, Chapman MJ, Humphries SE, et al; European Atherosclerosis Society Consensus Panel. Familial hypercholesterolaemia is underdiagnosed and undertreated in the general population: guidance for clinicians to prevent coronary heart disease: consensus statement of the European Atherosclerosis Society. Eur Heart J. 2013;34(45):3478-90a. doi: 10.1093/eurheartj/eht273. Epub 2013 Aug 15. Erratum in: Eur Heart J. 2020 Dec 14;41(47):4517. doi: 10.1093/eurheartj/ehaa166