How do you raise awareness of an inherited, hidden disorder?
FH Europe sought ways to involve all stakeholders in better outcomes for people born with inherited lipid conditions.
FH Europe is a non-profit organization in the healthcare and life science sector, founded as a European network of patient organizations, which are within countries and dedicated to the same purpose. Through an EY Ripples project, EY supported the organization’s desire to evolve towards a purpose-driven agenda for the benefit of all families affected by inherited dyslipidemias. Dyslipidemia refers to unhealthy levels of one or more kinds of lipid (fat) in the blood which often leads to premature cardiovascular disease. An example is familial hypercholesterole (FH) which causes lifelong severe elevation of blood cholesterol.
FH affects around 1 in 311 people across Europe, making it the most common genetic condition in the world. However, 90% of people born with it are undiagnosed, not treated in a timely and optimal manner, and at high risk for a heart attack early in life.
FH Europe’s team consists of highly motivated individuals, eager to make a positive impact on people across Europe and beyond. They do it by being supportive, collaborative and innovative. They were striving for the utopia state, in which, together with aligned patient organizations and other stakeholders, they would be able to prevent early heart attacks and deaths associated with dyslipidemia.
FH Europe aims to be the center of an ecosystem, collaborating and connecting various stakeholders from patient organizations, pan-European policymakers, impacted families, pharmaceutical companies, and healthcare providers.
The key challenges they face include low levels of stakeholder or “customer” intimacy and general awareness about the disease, as well as negative social stigma. Connecting and collaborating with patients and other stakeholders was seen as critical in providing a voice to patients (and potential patients) on a pan-European level. To overcome these challenges and become a recognized patient-centric organization, FH Europe’s purpose, vision, mission, and business model needed to be refined.