One voice in Europe on FH
The European Atherosclerosis Society FH Studies Collaboration and FH Europe announce partnership
We are delighted to announce to a new collaboration between Familial Hypercholesterolaemia (FH) patient representative network, FH Europe, and the FH investigators from all over the world who work together as part of the EAS FH Studies Collaboration (FHSC). This announcement is made on behalf of EAS President, Professor Lale Tokgözoglu, the FHSC Leads Professor Kausik Ray and Professor Alberico L. Catapano, together with Jules Payne, Chair of the FH Europe network.
FH continues to be a major global health problem, very common — worldwide, one in every 200 to 500 people has FH — yet widely underdiagnosed and undertreated. Most people who have FH do not know they have it. These people have inherited high cholesterol, and are at risk for premature atherosclerosis and early cardiovascular events that are often fatal. But if FH is identified early, and effective treatment begun, individuals with FH can live long and healthy lives.
Through this collaboration, by linking FH patient groups with expert clinicians from all over the world, we will share globally established best practices that will mean more persons with FH are identified early and, once they are identified, a smoother pathway for the patient to referral and potentially life-saving treatment in the clinic.
Patient and clinician networks working together to identify and better manage FH
FH Europe’s patient organisation network works to secure early identification and diagnosis of FH patients to prevent early cardiovascular disease, providing information to patients and families and supporting development of newer or smaller patient groups.
Closer interaction with FHSC’s network of expert clinicians as a result of this collaboration will have real benefits for FH patients. Interacting at national level, patient groups and clinicians will work together to establish and optimise communication and medical referral processes, so that once diagnosed, FH patients quickly receive all the information, support and treatment they and their families need.
Global data to inform policy development for early identification and optimal treatment of FH patients
Currently 84 contributing clinical leaders from 70 countries worldwide are submitting the information they have collected nationally about their FH patients to the FHSC’s global registry of FH patient cases. Analysis of this registry – currently standing at over 28,000 cases, expected to reach over 40,000 by the end of 2019 – is providing unique results about the global burden of FH covering every continent, and will provide new and uniquely detailed knowledge on how FH is detected and managed globally, the clinical consequences of current policies and practices on delivery of care, and how these in turn affect the life course of FH. EAS FHSC’s global data registry will allow us to make country-by-country data comparisons that will support and inform the development of international programmes, initiatives and policies specifically focused on FH.
Our collaboration aims to improve the diagnosis and management of FH patients globally, and we will work together on our common goals towards improving care for FH patients: working within the FH community with initiatives reducing gaps in knowledge, informing best practice, assisting in clinical trials design, and supporting clinical guidelines and development of policies; reaching outside the FH community by raising awareness of the burden of FH among healthcare professionals and policy-makers, and advancing global public policy on FH.
Through this collaboration FH Europe and the FHSC will speak with one voice on FH, driving early recognition, promoting stronger and more effective global advocacy, and improving the lives of millions around the world through the early detection and effective treatment of FH.
Familial Hypercholesterolaemia (FH), inherited high cholesterol, continues to be a major global health problem, very common, yet widely underdiagnosed and undertreated. Untreated FH can result in premature atherosclerosis and potentially preventable cardiovascular events that are often fatal. Less than 5% of individuals with FH are identified in most regions around the world.
FH Europe is a registered charity, Charity number 1170731, registered in England and Wales. Set up in 2015, comprises multiple FH patient groups (currently 24 organisations from 23 countries) across Europe. By sharing information & best practice FH Europe’s aim is to secure early identification and diagnosis of Familial Hypercholesterolaemia (FH). FH Europe members are both organisations and individuals that represent FH patient groups within their specific European country.
FH Europe Trustees Board: Chair, Jules Payne (Chief Executive of HEART UK – The Cholesterol Charity); Honorary Treasurer Gunnar Karlsson (Patient Association FH Sweden), Gabriele Hanauer-Mader (voluntary president and founder of FHchol Austria, the Austrian patient organisation for patients with FH or related genetic lipid disorders), Inese Maurina (co-founder in 2011 of the Latvian FH patient organisation ParSirdi.lv which she now heads) and Theodora Varkonyi-Weisz (co-founder and director of the Swiss FH organisation).
European Atherosclerosis Society (EAS) was founded in 1964 with the aim of “advancing and exchanging knowledge concerning the causes, natural history, treatment and prevention of atherosclerotic disease”. The Society contributes to the development of knowledge in the field, with publications and educational activities, and by providing a forum in which new research developments can be discussed, leading ultimately to the improved treatment of persons with cardiovascular disease and lipid disorders.
European Atherosclerosis Society FH Studies Collaboration (EAS-FHSC), set up in 2015, currently has a registry of over 28,000 FH cases (anticipated to attain 40,000 cases before the end of 2019). Publication of the first data analyses is planned for during 2019, providing robust information on the burden of both homozygous and heterozygous FH, how FH is detected and managed, and the clinical consequences of current practices on delivery of care and outcomes worldwide. This global initiative is led by Prof Kausik Ray (Imperial College London, UK) and Prof Alberico L. Catapano (Italy) and an executive committee comprising ; Dr. Tomas Freiberger (Czech Republic); Prof John Kastelein, Prof G.Kees Hovingh (Netherlands); Prof Pedro Mata (Spain); Dr Handrean Soran (UK); Prof Gerald Watts (Australia); Prof Frederick Raal (South Africa) and Prof Raul Santos (Brazil). The Coordinating Centre for the EAS FHSC is based at the Imperial Centre for Cardiovascular Disease Prevention (ICCP), School of Public Health, Imperial College London, UK.
Familial hypercholesterolaemia patient support groups and advocacy: A multinational perspective
Pooling and expanding registries of familial hypercholesterolaemia to assess gaps in care and improve disease management and outcomes: Rationale and design of the global EAS Familial Hypercholesterolaemia Studies Collaboration (Open Access)
European Society of Cardiology/European Atherosclerosis Society Task Force consensus statement on proprotein convertase subtilisin/kexin type 9 inhibitors: practical guidance for use in patients at very high cardiovascular risk
EAS Facebook – https://www.facebook.com/EuropeanAtherosclerosisSociety/
On Twitter @society_eas, @EASCongress and for the FH Studies Collaboration on @fhscglobal.
FH Europe is supported by an educational grant from Amgen Limited, Sanofi, Regeneron, Akcea Therapeutics Inc. and Amryt