Improving Europe-wide awareness, understanding, and access to diagnosis and treatment of inherited lipid conditions

About Us

FH Europe Foundation (FHEF) represents the needs of people with familial hyperlipidaemias. Covering both the most common genetic and inherited conditions in the world and the rare conditions, the Foundation acts in the area of advocacy and patient support, drives public health policy improvements and collaborates progressively with leading European and the EU institutions – like the European Commission, the European Parliament and many other EU stakeholders.

FH Europe Foundation is the next stage in the evolution of FH Europe (fheurope.org), the European Network of FH patient organisations. It was initiated in 2015 by a group of leaders of HEART UK, FH Sweden, FH Portugal, FH Norway and FH Austria and supported by a volunteer Steering Group, with an administration centre set up at HEART UK. In 2016, FH Europe was established as a legal entity – a Charitable Incorporated Organisation (CIO) in England and Wales with five Trustees.

Over the past 3 years, FH Europe has grown its Network and secured a leading place in the European public health policy space responding to the unmet needs of patients and people affected with inherited lipid conditions.

FH Europe has transferred its legal base from a charity based in the UK to a Dutch-based European Foundation. It was registered in May 2022 and began trading in March 2023. This development reflects our aspiration to lead and engage effectively in EU projects to advance the interests of patients and citizens living with FH and related inherited hyperlipidaemias, and also be active in the wider European Cardiovascular Health Community.

Our Mission

Our Objectives

Our Strategy

Our mission is to improve Europe-wide awareness, understanding, and access to diagnosis and treatment of inherited lipid conditions, (specifically FH, HoFH, Lp(a), FCS), so that all those impacted receive optimal treatment and support, resulting in longer and healthier lives.

Our vision is to achieve early recognition of life-threatening dyslipidaemias for all impacted people, in a future where:

There is an increased focus on prevention and early detection.
Care is more personalized.
Digital healthcare and online communication have become common.
Patients are relied on to provide expertise, support, and consultation to drive innovation.

So that together with our Network patient organizations and other stakeholders, we will be able to prevent the consequences (among them premature heart attacks and deaths) of inherited dyslipidaemias.

FH Europe Foundation (FHEF) has as its object the advancement of health - the prevention of early atherosclerotic cardiovascular diseases (ASCVD) and other diseases as a consequence of inherited dyslipidaemias, in particular through timely screening, diagnosis and treatment as well as education, health literacy promotion, access to treatment and related health policy influencing.

The FHEF foundation will specifically but not exclusively devote itself to the following activities:

the provision and sharing of information about dyslipidaemia, including familial hypercholesterolaemia (FH), elevated Lp(a), familial chylomicronaemia syndrome, and related conditions; and
the promotion of research into the causes, diagnosis and treatment of familial hyperlipidaemias and the dissemination of the useful results of such research;
advocacy of suitable policies and practices in the spheres of government, public health, healthcare, industry and other fora to promote prompt diagnosis and treatment of patients suffering from or likely to suffer from one of the conditions within our scope. This includes promoting support to them, their families and others affected.
strengthening and expanding the network of relevant patient organisations across Europe, including the support of new patient (advocacy and support) organisations creation.

To deliver on its mission, FHEF identified the following strategic projects:

Influencing European health policies to promote early screening and testing to detect inherited lipid conditions (roll out of the Prague Declaration)
Implementation of FH Paediatric Screening in Europe – EU Public Health Best Practice
Creation of the FH Europe Patient Ambassadors Programme – improvement of general awareness about inherited lipid conditions, building international capacity to advocate, advise and support multi-stakeholder partners in the health space
Multi-stakeholder collaboration – driving better and more inclusive outcomes for patients and people affected with familial hyperlipidaemias

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Governance

Prof. Joanna Lane

Chairperson

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Prof. Albert Wiegman

Secretary

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Dr Ingrid Klingman

Trustee

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Impact Report

Financial Statement

Policies

Our impact reports are available to download:

2021
2022
2023

FH Europe has been registered as a foundation - Stichting FH Europe Foundation, in the Netherlands, KvK number 86407481, RSIN number 863956762, since May 17th, 2022. It received ANBI (Algemeen nut beogende instelling - Public Benefit Organisation) status on January 30th, 2023 and has been trading since March 2023. Any finance and impact reports regarding previous years relate to FH Europe, England and Wales registered CIO.

Our financial reports are available to download:

Our ANBI forms are available to download:

FH Europe has been registered as a foundation - Stichting FH Europe Foundation, in the Netherlands, KvK number 86407481, RSIN number 863956762, since May 17^th, 2022. It received ANBI (Algemeen nut beogende instelling - Public Benefit Organisation) status on January 30^th, 2023 and has been trading since March 2023. Any finance and impact reports regarding previous years relate to FH Europe, England and Wales registered CIO.

Policy documents are available to download here

Industry Partners

FH Europe Foundation believes that meaningful progress requires collaboration across the health ecosystem. We work with responsible life sciences and healthcare industry partners who share our mission to improve early detection, prevention, care and outcomes for people living with inherited lipid disorders.

Our partnerships are built on mutual respect, transparency, independence, ethics and co-creation, following relevant standards including the EFPIA Code of Practice and MedTech Europe Code of Ethical Business Practice. Collaboration may take many forms—from awareness, education and patient support to policy, advocacy and research—but every partnership begins with a commitment to strategic, long-term collaboration through membership of the FHEF Industry Roundtable (IRT), our dedicated non-competitive and non-promotional forum for dialogue with industry partners.

Interested in joining our mission? Contact us to learn more about the Industry Roundtable and opportunities to collaborate with FHEF. info@fheurope.org

Our Industry Roundtable Partners 2025-2026

Collaborations

Meaningful and sustainable change cannot be achieved alone. FH Europe Foundation believes strongly in collaboration across the citizen, patient, scientific, policy and wider health communities, bringing together complementary expertise, perspectives and networks around shared goals. We are proud to be an active member of leading patient and advocacy alliances and to partner with scientific societies, professional organisations, research networks and think tanks in Europe and internationally. Through trusted partnerships, we share knowledge, amplify the patient voice, avoid duplication and, most importantly, achieve greater collective impact than any organisation could deliver alone.