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

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

Our impact report can be downloaded here

FH Europe was registered as a foundation in the Netherlands, Stichting FH Europe Foundation, KvK number 86407481, RSIN number 863956762, on 17th May, 2022. It received ANBI (not-for-profit) status on 21st February 2023 and has been trading since March 2023. As it has not yet completed a full financial year it has not produced an annual report and so the finance and impact reports shared on this website relate to the UK CIO for the year 2022.

Our latest financial report is available to download here

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. However it is not trading due to the pending ANBI status. Therefore, the finance and the impact reports shared on this website relate to current CIO.

Policy documents are available to download here

• Remuneration policy
• Commitment to equality, diversity and inclusion policy