24 November 2025
Jacardi

PERFECTO (Preventing thE PReventable-Familial HypErCholeserolaemia PaediaTric Screening for CardiOvascular Health) is an EU-funded project addressing a critical but often overlooked area in cardiovascular health: familial hypercholesterolaemia (FH). 

FH is one of the most common monogenic (single-gene) disorders, yet it remains underdiagnosed and undertreated, affecting an estimated 2.5 million people across Europe. If left untreated, FH leads to an increased risk of premature and preventable atherosclerosis, heart attacks, and even death. It is also important to note the existence of Homozygous FH (HoFH), which is a rare and very severe form.

PERFECTO’s mission is to empower people with FH and strengthen policy and practice by embedding meaningful patient engagement and citizen-driven innovation. The overarching goal is to transform how FH is recognized, diagnosed, and managed across EU Member States.

The project launched in December 2023 and is scheduled to run until May 2026.

PERFECTO is coordinated by the FH Europe Foundation (Netherlands). It is supported by partners from Germany, Romania, Cyprus, and Belgium, along with stakeholders from Bulgaria and Ukraine.

The project operates through five interdisciplinary Work Packages (WPs), which are further supported by advisory groups focused on science, reflection, and health economics.

The challenges faced by the project are substantial:

  • Low awareness of FH (both Heterozygous and Homozygous forms) among health professionals and the public;
  • Fragmented care pathways;
  • Limited patient involvement in health policy;
  • Lack of standardized screening and treatment protocols.

The consortium held its kick-off meeting in Warsaw, Poland in January 2024. Five core Work Packages were successfully established, focusing on project management, societal impact, communication, equity, and policy advocacy.

The project developed and is currently piloting a Person-Communication Model specifically for FH paediatric screening in Romania and Cyprus.

PERFECTO created a Societal Return on Investment (SROI) model designed to demonstrate public health impact.

The FH Europe Ambassador Programme was successfully launched, including the first in-person training held in Limassol, Cyprus in April 2025, aimed at empowering patient leaders across Europe.

Initial engagement with EU policymakers and outreach activities have taken place to promote inclusive, evidence-based policy dialogue. The project was referred to as an “exemplary case” of EU-funded projects contributing to CVD prevention by EU Commissioner for Health and Animal Welfare, Olivér Várhelyi.

The expected outcomes of the project include:

  • Broad implementation of FH paediatric screening across the EU;
  • Enhanced health equity, particularly for underserved and high-risk populations;
  • Increased public and professional awareness of inherited high cholesterol and its cardiovascular implications;
  • Evidence-informed tools and models (PCM, SROI) will support sustainable policies and funding for early detection;
  • The project aims for a stronger alignment of national strategies with the EU’s Healthier Together initiative and the upcoming Plan for European Cardiovascular Health.

European Commissioner for Health and Animal Welfare, Olivér Várhelyi emphasized the project’s importance, stating: “Cardiovascular diseases remain the leading cause of death in the European Union. Investing in prevention is essential, as is research to develop new and innovative approaches. Ongoing projects under the EU’s Healthier Together initiative, such as PERFECTO, help us tackle inherited high cholesterol, a major contributor to cardiovascular risk.” He thanked all involved for their commitment to improving citizens’ health.

Magdalena Daccord, Consortium Coordinator and CEO of FH Europe Foundation, reinforced the collaborative philosophy: “Together with people living with FH, advocates and ambassadors, clinicians, scientists, policymakers and health systems experts, we embark on this journey to bring innovative solutions to the forefront of CVD prevention. Together we can prevent the preventable”.

To follow the project’s journey and support a future free from preventable heart disease, check the project’s news on the following platforms;  Website, LinkedIn, Instagram, Facebook, X