Help us save lives – Become an FH Europe Trustee

Oct 27, 2021

Charity Trustee Role (Volunteer)

Help us to save lives. FH Europe is a young, yet very successful, energetic and ambitious patient network. We represent 26 patient organisations across 25 European countries  and continue to grow. Our purpose 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, care is more personalized, digital healthcare and online communication have become common and patients are relied on to provide expertise, support, and consultation to drive innovation.

This is so that, together with patient organisations and stakeholders, FH Europe can prevent the consequences, including heart attacks and deaths, of inherited dyslipidaemias. To do this we collaborate with key international institutions such as the European Patients Forum (EPF), EURORDIS (rare disease patient organisations), the World Heart Federation and the European Atherosclerosis Society, as well as locally with national patient organisations and industry stakeholders. As of 2021, we are a member of the European Alliance for Cardiovascular Health (EACH). As we continue this exciting phase of our organisation’s life, we are seeking enthusiastic Trustees, who are:

  • Living with or affected by an inherited dyslipidaemias such as FH, HoFH, Lp(a) or FCS
  • Considered an active member of the patient community that they represent and may already be a member a FH Europe member organisation.
  • Are knowledgeable and active in advocacy related activities such as health policy and fund raising.
  • Able to effectively communicate and articulate opinions and recommendations in English.
  • Team players and have experience working in an international, diverse, dynamic and virtual team.
  • Willing and able to commit 2-3 days a month to FH Europe for board meetings, project-related tasks and stakeholder engagement.

Please note this is a volunteer role, initially for 3 years. We welcome applications from people of all ages and backgrounds that are living with or affected by inherited dyslipidaemias. Whether you are an experienced Trustee or wanting to take your first step at Board level, we would love to hear from you.

What we can offer you:

  • A chance to contribute to improving and saving lives!
  • Induction, expert patient advocate training opportunities & participation in scientific events and conferences and publications 
  • The prospect to build an influential pan-European organisation, make strategic decisions & develop new skills.
  • Access to an international network of incredible people in the wider health promotion and healthcare ecosystem.
  • The possibility to represent the voice of those living with and affected by inherited lipid conditions to influence and shape innovative projects that can create greater impact for society.

Additional information:

Next steps:


FH Europe is registered as a charity; Charity number 1170731, registered in England and Wales.

FH Europe is registered as a charity; Charity number 1170731, registered in England and Wales.

FH Europe is supported by an educational grant from Amgen Limited, Sanofi, Regeneron, Akcea Therapeutics Inc. and Amryt
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