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March 5, 2025

No More Waiting: Action Needed for People with Rare Diseases!

The message was loud and clear at the Impact of Rare Diseases: More Than You Can Imagine event in the European Parliament on March 5: people living with rare diseases, including those with HoFH and FCS, cannot afford to wait any longer for faster diagnoses, better treatments, and equitable care. Co-hosted by MEPs Stine Bosse […]

March 4, 2025

Beyond Cholesterol: Why Weight Matters Even with Genetic High Cholesterol

Today, on March 4, World Obesity Day, we explore an important health connection that affects millions worldwide. For those living with familial hypercholesterolaemia (FH) – a genetic condition causing high LDL cholesterol – emerging research offers new insights into how weight affects their heart health. People with FH often focus primarily on their LDL cholesterol […]

February 28, 2025

FHEF February 2025 Edition Heart Beat Newsletter

Explore the highlights from FH Europe's February 2025 Heart Beat newsletter to catch up on the latest news and events in the world of cardiovascular health: More than you can imagine: Celebrating Rare Disease Day 2025 with various activities and webinar FH Europe's Young Ambassadors among EURORDIS’ Rare Is Beautiful Photo Award 2025 finalists Members […]

February 25, 2025

A Step Forward for HoFH Patients in Lebanon: A Meeting with the Presidential Office

For patients living with Homozygous Familial Hypercholesterolaemia (HoFH) in Lebanon, access to life-saving treatment has been an ongoing challenge. Due to the country’s ongoing crises, LDL apheresis—the only available treatment for HoFH patients in Lebanon—was discontinued for a period, then resumed inconsistently. This uncertainty placed patients at high risk for premature cardiac events and severe […]

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