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News: FHSC

New joint paper — Global Call to Action on FH — FH scientific & patient groups tackle burden of FH

Thursday 2 January 2020   (0 Comments)
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The European Atherosclerosis Society and FH Europe, the European FH Patient Network, collaborate with global stakeholders led by the World Heart Federation to tackle the global burden of Familial Hypercholesterolaemia (FH)

Gothenburg, January 02, 2020.

The EAS, together with FH Studies Collaboration and FH Europe, and in collaboration with the World Heart Federation (WHF), IAS and FH Foundation announced today the publication of a Global Call to Action on familial hypercholesterolaemia (FH) — a vastly under-recognized and poorly managed public health concern — in JAMA Cardiology. Authored by a global panel of scientific experts, public health officials, advocacy leaders 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. It is estimated that FH impacts 34 million people worldwide. FH causes high LDL-cholesterol from birth. Accelerated deposition of cholesterol in the walls of arteries leads to atherosclerosis, which 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 timely and treated appropriately, heart attacks, strokes and the need for surgery can be prevented.

The EAS and FH Europe participated in an international coalition, convened by the World Heart Federation, to re-examine and update key recommendations issued by the World Health Organization (WHO) in their Report on Familial Hypercholesterolaemia in 1998. In the more than 20 years since that report, few of these recommendations have been systematically implemented on a country-by-country basis, leaving 9 out of 10 people born with FH undiagnosed.

“Familial hypercholesterolaemia represents a global challenge and requires input from multiple stakeholders to reduce the burden of disease. The EAS FHSC was initiated to provide unprecedented information on the burden of FH, how it is detected and managed. This unique registry is providing important information on detection and management gaps and a global surveillance for FH. To date 70 countries and data on more than 61,000 individuals with FH have been registered, representing an unprecedented opportunity to inform public health,” - said Prof Kausik Ray, Lead for the European Atherosclerosis Society FH Studies Collaboration (EAS FHSC). “The aim with this Call to Action is to highlight that we have the knowledge and tools to help these families escape the ravages of heart disease, and to provide a roadmap so that we can implement best practices to save their lives.”

The EAS FH Studies Collaboration (EAS FHSC) collaborates with FH Europe to speak with one voice on FH in Europe. By linking FH-patient groups with expert clinicians from all over the world, we share globally established best practices, meaning that more persons with FH can be identified early in life and, once they are identified, follow a smoother pathway to referral and potentially life-saving treatment in the clinic.

Jules Payne, Chair of FH Europe added – “The FH Global Call to Action is a very important publication. There is an urgency to raise awareness, identify and optimally treat everyone who has FH. This publication is a game changer in saving lives and keeping families together”.

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. FH represents a major global health problem because, despite being very common, it is widely underdiagnosed, undertreated and, as a result often fatal. The consequences of FH are potentially preventable but require effective initiatives and policies to address the current issues and reduce the burden of disease.

“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 are 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.”

FH Studies Collaboration >>

FH Europe >>

To the article in JAMA Cardiology >>

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