Familial Hypercholesterolemia: A “Spelling Mistake” in Our DNA

FH Europe is an umbrella organization of international patient networks that actively work together to secure early identification and diagnosis of Familial Hypercholesterolemia (FH) and other inherited lipid conditions, including rare forms, to prevent early cardiovascular disease (CVD). FH is an inherited condition that causes high levels of cholesterol – sometimes double or even three or four times. It affects around 1 in 250 people – but the prevalence may vary across Europe. FH is a genetic condition caused by a “spelling mistake” in our DNA – the genetic material with all the instructions needed to “build” humans. FH Europe strives 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 can receive the best possible treatment and support – which results in longer and healthier lives.

The Prague Declaration is a call to action (seven specific asks) for national and European Union policymakers and decision-makers. It is a political document and the result of the Czech EU Presidency meeting on FH Pediatric Screening (early detection of inherited high cholesterol) at the Czech Senate in Prague on September 6, 2022.  The Prague event addressed the outstanding barriers to the systematic implementation of FH pediatric screening across Europe and the concrete actions needed to move forward. It also builds on the Technical Meeting of the Slovenian EU Presidency in October 2021.

FH Europe invites national and regional policymakers across the EU, medical societies, patient and public health organizations, and individual experts to sign and support this declaration.