FH Europe joins EPF

FH Europe became an Associate Member of the European Patients Forum in April 2021. We sat down with them to discuss their mission, vision and what they will bring to the EPF community!

What is the mission of FH Europe?

FH Europe is a charity, registered in England and Wales. The organisation is a network of 25 patient organisations across 24 European countries. All of our network members may differ in structure, size, and individual missions, yet all have at least one area of impact in common, which brings us together. The European FH Patient Network is actively working together to secure early identification and diagnosis of people with Familial Hypercholesterolemia and other inherited lipid conditions to prevent early cardiovascular disease. It is however important to state, that our charity is currently undergoing an important exercise of rephrasing its purpose to better serve our beneficiaries and to be more impactful in the post-Covid era. This is made possible in collaboration with EY, global consulting company, helping us through “EY Ripples” corporate responsibility program.

What is the history of the organisation?

The Network was first established in 2015. Initial discussions about creating a network took place in London, between HEART UK, FH Sweden, FH Portugal, FH Norway and FH Austria, followed by a formation of a network, named FH Europe, supported by a volunteer Steering Group. The administration centre for FH Europe was set up at HEART UK in 2016. The number of countries in the network increased to over 20, and a members’ directory was produced. That same year FH Europe was promoted at stands at conferences in Innsbruck (May) and Amsterdam (Sept.). Also, first electronic communications channels were established to facilitate the network - a Twitter account, a bi-monthly E-flash newsletter, and a provisional website. Most importantly FH Europe was established as a legal entity – a Charitable Incorporated Organisation (CIO) with five Trustees. From 2017

FH Europe was represented at healthcare conferences in Europe and policy activity continues to promote the key concerns originally set out in the 2015 Call to Action. The April 2017 ‘heat map’ provided an illustrated guide to progress on implementing FH services across Europe. The current website was developed to provide information for members and patients and provide training in policy and communications activity for member organisations. In 2019 the Board of Trustees decided to professionalize the organization and to appoint a Chief Executive.

Since then FH Europe became a member of World Heart Federation, Eurordis and European Patients' Forum. It established working partnerships with the global FH registry  EAS FH Studies Collaboration, leading international scientific and medical societies like European Atherosclerosis Society, International Atherosclerosis Society and European Society of Cardiology and other patient groups like Global Heart Hub or European Heart Network.

What is the achievement you are most proud of in your advocacy work?

The Network has a number of meaningful achievements under its hat. The most impactful ones in the recent times are focused around influencing public health policy, building stronger collaboration with key stakeholders in the space of advocacy, science and research. One of them is Global Call to Action on FH, containing 9 clear and actionable recommendations on how to address the burden of Familial Hypercholesterolemia. It was published in January 2020 in JAMA Cardiology and is an outcome of global multi-stakeholder collaboration. Among them patient advocacy groups, scientific and medical societies, policy makers, researchers. It has been translated in over 20 languages and serves as a set of guiding principles in our work. That achievement was followed by a huge success on an European level, in line with one of the recommendations around screening for FH. FH Europe in collaboration with leading European experts submitted a comprehensive best practice on pediatric FH screening to the European Commission Public Health Best Practices portal. After a long verification process, it was successfully accepted in January 2021. Since then, our efforts are focused on promoting systematic child screening in Europe for inherited high cholesterol.

What is your biggest challenge for 2021? And the biggest hope?

Our biggest hope for 2021 is to continue building a connected and a strong network, while we expand our support for individual patients, not associated with any specific patient organisations. We also wish to leverage the positive trend of using social platforms to continue facilitating health literacy and reach people, who previously might have been left out. With our mission and strategy refining project we aim to build a forward looking organisation, fit for purpose and creating impact for our beneficiaries.

In more tangible terms, our biggest aim for this year is to move forward with the FH paediatric screening best practice and to reach the European Steering Group on Health Promotion, Disease Prevention and Management of Non-Communicable Diseases, to support our efforts to roll it out on an EU level.

What is the most common misconception regarding your disease area (if not a national coalition)?

FH Europe advocates for people with inherited lipid conditions, where familial hypercholesterolemia is undoubtedly the biggest issue. It is the most common genetic condition in the world. One person in about 300 is born with this inherited high cholesterol disease. However, despite its high prevalence and catastrophic consequences, when undiagnosed and untreated, it is identified in only 10% of people born with it. This means that 9 in 10 people with FH are left at risk of premature cardiovascular disease (CVD), heart attack and/stroke, even death. Despite available screening methods, guidelines, treatments and available health lifestyle advice – patients are not identified timely nor managed adequately to reach their healthy values. FH is an invisible condition, impacting whole families. There is also a huge issue of stigma and lack of disease knowledge associated with familial hypercholesterolemia. Most frequent misconception among general public is that cholesterol issues and CVD are caused by unhealthy lifestyle habits, bed diet and lack of physical activity, which is absolutely incorrect. Conversely, many people with confirmed FH hope to successfully resolve the issue with diet and sport only. However, without the use of appropriate medication accompanied by healthy lifestyle (diet, physical activity and NO smoking) - this genetically cased health issue cannot be managed

What will you bring to the EPF Community? What would your organisation like to contribute?

Lots of enthusiasm and positive energy. At the same time we are happy to share with any best practices and experiences from our successes in advocacy and policy influencing on both national and European levels. We also bring specific examples of patient support projects in collaboration with the societies and the global registry, intended to help them identify local expert clinicians, awareness campaigns, novel educational projects for HCPs and global advocacy mapping with global stakeholders.

For more information about FH Europe, visit their website.