PerMed FH - Personalising diagnosis and treatment for Familial Hypercholeserolaemia patients

PerMed FH: Unlocking Precision Care for Familial Hypercholesterolaemia

Advancing Genetic Diagnosis and Tailored Therapies Through Personalised Medicine

Permed FH is a transformative initiative with a clear mission: to bring the power of personalised medicine to individuals and families affected by familial hypercholesterolaemia (FH). By integrating advanced genomic tools, high-throughput variant analysis, targeted drug screening, and digital innovation, Permed FH is paving the way toward truly individualised care.

This project isn’t just about improving treatment—it’s about changing the course of lives. For future generations, it means earlier diagnosis, more effective therapies, and the ability to prevent severe cardiovascular events before they ever occur. With Permed FH, we move from one-size-fits-all medicine to a precision approach where each patient’s genetic makeup guides their care.

This is a bold step toward a future where no child inherits a preventable risk without a solution—and no family faces the burden of FH without hope.

Two hands holding a white paper cutout of a family against a turquoise background, with a stylised DNA helix integrated into the design, symbolising genetic connections and personalised healthcare.
Black-and-white photo of a family walking on a beach boardwalk, with two adults in striped tops and a young child between them wearing a top with combined horizontal and vertical stripes, symbolising inherited genetic traits from both parents.
1 in 300
people affected by FH
Read the story behind this photo

Unmasking FH: A Silent Threat With Deadly Consequences

Despite its frequency and severity, FH remains vastly underdiagnosed. Many individuals go undetected simply because their genetic variants are classified as 'variants of unknown significance,' offering no clear path for diagnosis or treatment.

Familial hypercholesterolaemia (FH) affects 1 in 300 people, causing dangerously high cholesterol levels from birth and raising the risk of early heart attacks up to 20-fold.

In 90% of cases, a pathogenic variant in the LDLR gene is responsible—but many of these variants remain unclassified, leaving patients undiagnosed and untreated.

Existing therapies can be effective, but their success depends on the specific genetic defect—making personalised treatment not just beneficial, but essential.

Main Goals of PerMed FH

Permed FH aims to develop tools for the implementation of personalised medicine in FH. By enabling targeted treatment based on specific genetic variants, Permed FH will enhance diagnosis, improve treatment outcomes, reduce side effects, and support patient adherence, ultimately leading to better management and health outcomes for FH patients.

01
Classification

 Establishing a high-throughput pipeline for variant classification.

02
Optimisation

Developing a platform for drug optimisation tailored to individual genetic profiles.

03
Screening

Screening novel therapies targeting LDLR transport defects.

04
Platform

Creating a digital platform to integrate genetic, functional, and pharmacological data for clinical use.

Work Packages Behind PerMed FH

A Collaborative Initiative to Deliver Personalised Medicine for FH

Permed FH is structured into six interconnected work packages (WPs), each aligned with the core objectives of the research initiative. These include the functional characterisation of variants of unknown significance, the development of a drug optimisation platform, drug screening, digital health solutions, and strategic design for personalised medicine.

The sixth WP focuses on essential support functions, encompassing project management, financial oversight, administration, communication, and intellectual property management.

Together, these work packages are designed to deliver personalised, patient-centred solutions for individuals with familial hypercholesterolaemia, ultimately aiming to improve health outcomes and quality of care.

A molecular model representing an interconnected structure, symbolising the six collaborative work packages of the PerMedFH project aimed at delivering personalised medicine for familial hypercholesterolaemia
The project leading to these results has received funding from “la Caixa” Foundation and FCT, I.P. under the project code: LCF/PR/HP23/52330032. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the "la Caixa" Foundation or the FCT. Neither "la Caixa" Foundation nor the FCT can be held responsible for them.
© 2026 - PerMed FH
The black-and-white photo illustrates a family walking along a boardwalk at the beach. The family consists of two adults and a young child, all dressed in striped tops. Initially, the child's top was plain white when the photo was taken. Prof. Dr. Eric Sijbrands came up with an idea to represent inheriting genes from both parents with the help of the image. In 1992, he skilfully added horizontal and vertical stripes to the child's top, transforming the T-shirt and the whole image, which he then used in a presentation at his department. The matching patterns and the act of walking together metaphorically highlight the transfer of genetic traits from parents to offspring, emphasizing the continuity of genetic information across generations. Today, the image is used in many presentations across the world as a visual analogy for how genetic traits are passed down within families.

Prof. Dr. Eric Sijbrands is a full professor of vascular medicine at the department of internal medicine of the Erasmus MC, the university hospital in Rotterdam. After he qualified as a medical doctor in 1990, he was given the opportunity to receive his training in internal medicine and perform scientific research at the Universities of Leiden and Amsterdam. He was one of the founding fathers of the worldwide first and largest population-based genetic diagnostic cascade screening program: the Dutch national molecular screening program for familial hypercholesterolemia. His work improved the insurability of patients with familial hypercholesterolemia globally: identified and on statins, they now pay regular premiums.