24-27 September 2024
FH Awareness Day: September 24
Introducing EAS FH Week 2024
As part of EAS FH Week 2024, we want to make FH more visible to the general public, medical professionals, and government decision-makers, demonstrating that we need to manage FH together, in close collaboration.
You are welcome to follow us on social media and join us in disseminating FH-related information within your network using the hashtags #FHWeek, #FindFH, #FHAware, and #FHAware2024.
About FHSC
The EAS-FHSC is dedicated to enabling the medical and global communities to advocate for changes within their countries or organizations regarding the detection and management of Familial Hypercholesterolaemia (FH). Our goal is to encourage early diagnosis and more efficient treatment of this condition.
To tackle these challenges, the EAS FH Studies Collaboration (FHSC) has been gathering data from FH investigators worldwide since 2015.
Increasingly, the number of collaborating centers is growing year by year.
Read more about the EAS-FHSC objectives and structure
Think globally, act locally
Within our network, FHSC supports national coordinating centers in their efforts to implement tailored treatment strategies aligned with their country’s unique requirements, all with the goal of lessening the global burden associated with FH.
It’s worth noting that each year, we present updates and new findings from these initiatives.
During FH Week, we aim to spotlight the successful activities and publications that emerge from these ongoing activities.
Read about FH-related national activities and recent developments
Global Network & registry: get involved
Do you have an interest in FH, collect clinical and/or genetic FH data and are keen to contribute to the EAS FHSC Global Registry (CT.gov Identifier: NCT04272697)?
If so, we would like to hear from you! For enquires contact: info@eas-fhsc.org
FHSC Coordinating Centre provides a free essential web-based resource exclusive to FHSC Investigators and their local teams to support entering and managing local-level data, and sharing data with the FHSC Global Registry. Ask the Coordinating Centre for
more details.
Discover the latest FH publications for 2024
Discover a collection of FH-related publications from the Atherosclerosis Journal, featuring the latest research, expert insights, and some of the most widely-read titles. Stay informed with cutting-edge studies that explore breakthroughs in familial hypercholesterolemia and advancements in cardiovascular health.
FH related publications for 2024
Watch FH-related lectures from the EAS Congress 2024
Many aspects of FH are an important area of discussion for our scientific community. We have collected FH-related lectures from our latest congresses, especially EAS Congress 2024.
They are published here for free during FH Week. All you need to do is use your EAS username and password to log in.
Lectures related to FH from the EAS Congress
The EAS Lipid Clinic Network (LCN)
Working together to address challenges in management of lipid disorders in European countries. The LCN will provide a structure to establish uniform EU-wide standards of diagnosis, management and treatment of patients with lipid disorders, based on the ESC/EAS Guidelines on management of dyslipidaemias.
Read more about the EAS Lipid Clinic Network (LCN)
FindMyLipidClinic.com – a Global Web-Based Directory of Lipid Clinics
The EAS FHSC Global Registry compiles secondary, unidentifiable, anonymised data on the burden of FH worldwide. These secondary data are sourced from active FH patients registries, independent and external to the FHSC, worldwide. The FHSC Global Registry is led by the FHSC Coordinating Centre at Imperial College London.
This innovative tool not only allows its users to find specialists and support organisations around a location. It goes further by allowing its users to filter specialist clinics according to the services they offer (e.g. treating adults or children, genetic testing, Lp(a) testing, which imaging test, etc.). FindMyLipidClinic.com has been translated and made available in 29 languages to reach more patients worldwide.
FindMyLipidClinic.com is GDPR compliant, it does not store any users’ personal information, and is reasonably accessible to visually impaired people.
Read more and register your lipid clinic
Help us collect 1 million+ signatures for cardiovascular health and save lives
After FH Awareness Day, the world will come together to celebrate World Heart Day on September 29th.
We call on all governments and decision-makers to put an action plan in place to defeat the world’s biggest killer. Cardiovascular disease (CVD) is the leading cause of death, claiming more than 20 million lives every year.
This petition is for everyone who cares about better health and access to diagnosis, care, and disease prevention. Act now and urge leaders to address CVD with a bold national action plan. Let’s create a productive global community of healthier hearts, supported by smart investments and responsible policies.
To sign the petition, visit the main page of our website and scroll down to find the special widget. Share this initiative with your colleagues.
Recent publications from the EAS on FH
Familial hypercholesterolaemia in children and adolescents from 48 countries: a cross-sectional study
Familial hypercholesterolaemia is a monogenic disorder with a global prevalence of 1 in 311 people, resulting in lifelong increased LDL cholesterol (LDL-C) concentrations and risk of premature atherosclerotic cardiovascular disease (ASCVD).1,2 In 2021, the European Atherosclerosis Society Familial Hypercholesterolaemia Studies Collaboration (FHSC) reported that adults with familial hypercholesterolaemia were diagnosed between age 40 years and age 49 years, with more than one in six adults already having established ASCVD.2 However, only 2·1% of adults were diagnosed in childhood or adolescence;2 hence, undetected familial hypercholesterolaemia might be responsible for one in ten myocardial infarctions under age 50 years.3 Identification of people with familial hypercholesterolaemia in childhood and early initiation of lipid-lowering medication (LLM) can substantially mitigate the risk of premature ASCVD, enabling a life course that is equivalent to the general population as opposed to affected parents or grandparents, who are predominantly diagnosed with familial hypercholesterolaemia after an ASCVD event.2–7 Despite these compelling data, health-care systems worldwide identified less than 10% of individuals of any age with familial hypercholesterolaemia.1,2 As one child is born with familial hypercholesterolaemia every minute,8 approaches to early detection should be revised to reduce the deficit between prevalence and detection.
Currently, a quarter of the global population with familial hypercholesterolaemia are estimated to be children or adolescents, offering a unique opportunity to alter the future burden of ASCVD that is attributable to familial hypercholesterolaemia.9
We aimed to characterise the child and adolescent population with heterozygous familial hypercholesterolaemia (HeFH) and to provide evidence-based insights that might guide future public health approaches to detecting and managing familial hypercholesterolaemia early in life.
Latest from the FHSC registry: take action now for universal cholesterol screening in early life
The Lancet. https://doi.org/10.1016/S0140-6736(23)01842-1.
Published: December 13, 2023
Familial hypercholesterolaemia (FH) is the most common inherited lipid disorder, affecting about one in 300 people worldwide. If untreated, elevated low-density lipoprotein cholesterol (LDL‑C) levels from birth confer an increased risk of premature atherosclerotic cardiovascular disease. Early detection and treatment are therefore crucial to reduce the burden of preventable cardiovascular complications. Unfortunately, as demonstrated by the European Atherosclerosis Society (EAS) Familial Hypercholesterolaemia Studies Collaboration (FHSC) global registry in over 42,000 adults, late diagnosis (in the 40s) is usual.
Universal cholesterol screening in early life has been advocated as an effective strategy, first in 1998 by the World Health Organization as a public health priority in FH care, and more recently, by the World Heart Federation and the European Commission Public Health Best Practice Portal, the latter which recommended paediatric FH screening as one of the best practices in non-communicable disease prevention. In reality, however, this vital opportunity to impact the long-term health of children with FH is missed, as demonstrated by latest data from the FHSC, published recently in The Lancet.
Global FHSC registry makes the case for universal cholesterol screening of children for familial hypercholesterolaemia
The Lancet. https://doi.org/10.1016/S0140-6736(23)01842-1.
Published December 13, 2023
Finding children with familial hypercholesterolaemia (FH), the most common inherited lipid disorder, relies on family cascade screening, usually after a parent or relative has a heart attack, as physical signs of FH in children are uncommon, meaning that detection is delayed in most. These were the key findings from the European Atherosclerosis Society Familial Hypercholesterolaemia Studies Collaboration (FHSC) global registry, including nearly 12,000 children with FH from 48 countries, which was published in The Lancet. As early detection and treatment of FH are essential to prevent heart attacks associated with high cholesterol in later life, these data make the case for a paradigm shift to universal screening in children to avoid delays in detection.
2023 Update on European Atherosclerosis Society Consensus Statement on Homozygous Familial Hypercholesterolaemia: new treatments and clinical guidance
In 2014, the European Atherosclerosis Society published a consensus statement specifically focused on homozygous familial hypercholesterolaemia (HoFH) (1), aiming to improve the care of individuals with this rare and difficult-to-treat condition. This statement subsequently catalysed initiatives to refine what is meant by ‘HoFH’ in terms of genetics, new therapeutic approaches, as well as a global registry on HoFH care to inform health policy. The Homozygous Familial Hypercholesterolaemia International Clinical Collaboration (HICC) registry, an international network of healthcare providers managing HoFH patients, provided important information on the burden of HoFH. With data from over 750 HoFH patients across 38 countries (2), the HICC registry showed that patients were diagnosed too late (median age of 12 years), when one in 10 had already experienced a coronary event. Treatment disparity between high and non-high-income countries was also evident, impacting patient outcome, with a first cardiovascular event occurring about a decade earlier among those in less affluent versus high income countries (2).
The 2023 update to this HoFH consensus statement has addressed several areas of persistent concern (Box 1) (3). A key strength is provision of updated diagnostic criteria for HoFH, with the recommendation to prioritise phenotypic features over genotype. Importantly, an untreated low-density lipoprotein cholesterol >10 mmol/L (>~400 mg/dL) is suggestive of HoFH and should prompt further evaluation.
New insights in the genetics of FH discussed by Prof. Mafalda Bourbon
Mafalda Bourbon is a senior researcher at the National Institute of Health in Portugal (INSA), where she serves as the coordinator of the R&D Unit and Head of the Cardiovascular Research Group within the Department of Health Promotion and Prevention of Non-Communicable Diseases.
As a leading researcher in the field of genetics of familial hypercholesterolemia (FH), her work has significantly enhanced the identification, functional characterization, and interpretation of variants found in patients with a clinical diagnosis of FH and other dyslipidemias.
In this lecture, she will explore the most recent advances in the genetic diagnosis of FH.
Join us on Social Media
Follow us on social media and help connect and disseminate the FH related information within your network using #FHWeek, #FindFH, #FHAware & #FHAware2024. During FH Week, FH related information is published daily in our social media channels.
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