FH Foundation, World Heart Federation, and International Coalition Collaborate to Tackle the Global Burden of Familial Hypercholesterolemia

PASADENA, Calif., GENEVA, Switzerland,  January 2, 2020 —  The FH Foundation and the World Heart Federation announced today a Global Call to Action on familial hypercholesterolemia (FH), a vastly under-recognized and poorly managed public health concern. Published in JAMA Cardiology and authored by a global panel of scientific experts, advocacy leaders, public health officials, and individuals with FH from 40 countries, the report notes glaring gaps in screening and guideline-based care for FH, the most common cause of early and aggressive heart disease.

FH is an inherited metabolic disorder found in all races and ethnicities and impacts 34 million people worldwide. FH causes high LDL-cholesterol from birth and should be diagnosed and treated within the first two decades of life. Left untreated, individuals with FH have a 20-times higher risk of illness and death from cardiovascular disease (CVD). However, if diagnosed and treated, heart attacks, strokes and the need for surgery can be prevented.

The international coalition was convened by the FH Foundation and World Heart Federation to reexamine and update key recommendations issued by the World Health Organization (WHO) in their report on Familial Hypercholesterolemia in 1998.  In the 20 years since that report, few of these recommendations have been systematically implemented on a country-by-country basis, leaving nine out of 10 people born with FH undiagnosed.

“Familial hypercholesterolemia represents an unprecedented opportunity for prevention of heart disease,” said Katherine Wilemon, Founder and CEO of the FH Foundation.  “Our aim initiating this Call to Action is to highlight that we have had the scientific understanding, and effective therapies, to stop inherited coronary heart disease, but have allowed generations of families to go uncared for.  It is time to address Familial hypercholesterolemia as a public health priority.”

The FH Global Call to Action coalition cites mounting scientific data, the commercialization of novel therapies, and technological advances as further impetus for public health officials and governments to commit to early screening and coordinated lifetime care for this large and vulnerable population.

“The success of the concrete and actionable recommendations we issue today will depend on support from governments, which is why we are jointly addressing them as a global community now,” said Jean-Luc Eiselé, CEO of the World Heart Federation. “Each of the partnering organizations is committed to advocating to improve and expand FH care in their countries. The Global Call to Action on FH is an unprecedented opportunity to prevent premature cardiovascular disease in future generations worldwide.”

Participating organizations include: Ailevi Hiperkolesterolemi Derneği (Turkish Association of Familial Hypercholesterolemia), Associação Brasileira de Hipercolesterolemia Familiar, Associación Mexícana de Hipercolesterolemia, Familiar

Association Nationale des Hypercholestérolémies Familiales (Anhet.f), Associazione Nazionale Ipercholersterolemia Familiare (ANIF), Belchol, Cholesterol & Co e.V (CholCO e.V), Diagnóza FH,

European Atherosclerosis Society, European Society of Cardiology, FHchol Austria, FH Australasia Network, FH Canada Network, FH Europe, FH Foundation, FH IberoAmericana Network, FH Mexico, FH Sverige, Fundación Hipercolesterolemia, Familiar

Fundația pentru Ocrotirea Bolnavilor cu Afectuni Cardiovasculare (FOBAC), GIP-FH

Harteraad, Heart UK, International Atherosclerosis Society, Italian Association of Inherited Dyslipidemias (A.I.D.E), LDL Greece Lipid Association of India, National Lipid Association, Pacientes de Corazón, ParSirdi.lv Patient Society, Preventive Cardiovascular Nurses Association, SZIVSN (FH Hungary Patient Association) and the World Heart Federation.

About the FH Foundation

The FH Foundation is a leading research and advocacy non-profit organization focused on reducing heart disease by driving the scientific understanding and evidence-based care of FH. The mission of the FH Foundation is to save lives by serving families living with FH and contributing to scientific research that leads to greater understanding and improved diagnosis and treatment of FH worldwide.  Please visit www.TheFHFoundation.org for more information.

About the World Heart Federation

The World Heart Federation is dedicated to leading the global fight against CVD, including heart disease and stroke. We are the only global advocacy and leadership organization bringing together the entire CVD community to drive the CVD agenda and help people live longer, better, more heart-healthy lives.  We and our Members – more than 200 organizations, scientific societies, foundations, and patient associations in over 100 countries – believe in a world where heart health for everyone is a fundamental human right and a crucial element of global health justice. Please visit www.worldheartfederation.org for more information

Link to the Study here

Media Contact:
Borjana Pervan
World Heart Federation
+41 22 807 03 27
borjana.pervan@worldheart.org

Media Contact:
Amanda Sheldon
The FH Foundation
(626) 583-4674
ams@thefhfoundation.org