We refine our vision and purpose 

FH Europe is committed to improving lives of families affected by inherited dyslipidaemias

FH Europe is a non-profit organisation in the patient advocacy space, founded as a network of European patient organisations which share the same purpose. We face an environment of continuously unmet needs of patients and citizens with inherited dyslipidaemias, a heightened focus on CVD and its prevention in the light of the impact of COVID19, as well as growing innovation leading to novel therapies and digital solutions and increased patient awareness and engagement. FH Europe aims to be the centre of that ecosystem, collaborating and connecting stakeholders from patient organisations, impacted individuals and families, pan-European policymakers, researchers, healthcare providers and pharmaceutical companies.

At the beginning of 2021, the extended Board of FH Europe, partnered with by Ernst and Young (EY), to evolve a purpose-driven agenda which would help to overcome some of the key challenges faced by the organisation and the patient community for the benefit of all families affected by inherited dyslipidemias (specifically FH, HoFH, Lp(a), FCS).  

Together with EY, FH Europe leveraged EY wavespaceTM to co-create an evolved strategy and purpose using a future-back approach. Future back is a method of defining a future, ideal state or destination and then working backwards to determine the right near term priorities and milestones. EY supported us with an experienced cross-functional team including transformation leaders, healthcare specialists and a wavespace experienced designer. Also, several of the FH Europe Network’s members, representing the patient voice, leading experts from the European research and clinical field as well as patient advocacy, funders, and industry experts, were involved to provide additional insights. This powerful combination created an iterative working atmosphere complemented by a future-back approach. In the end, we identified our desired end-state, and revised our purpose, vision and mission statements. Work continues in mapping our beneficiaries and stakeholders and refining our value proposition.

“To be able to effectively improve the lives of individuals and their families affected by inherited dyslipidaemias in Europe and beyond, we must fine tune our value proposition to the Network and the wider community and develop a sustainable business model and visionary transformation journey.” says Magdalena Daccord, FH Europe’s Chief Executive.

Today, we are delighted to share our purpose and vision, as an outcome of the project:

Guiding Purpose

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

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 FH Europe, together with patient organisations and stakeholders will be able to prevent the consequences, including heart attacks and deaths, of inherited dyslipidaemias.

“The exercise was invaluable in refining and aligning the Board’s vision and the organisational purpose, and in helping us to fix our priorities to secure the biggest impact on this little-known, but insidious and surprisingly common set of conditions.” – says John Reeve, FH Europe’s Chair.

We would like to thank EY Basel as well as all the contributors for their support, expertise, and time, generously offered in this project.