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December 13, 2025

What the New EU Pharmaceutical Legislation Means for Patients

After years of discussion, negotiation, and political debate, the European Union has reached a milestone moment for medicines policy. The revision of EU pharmaceutical legislation—first launched by the European Commission in 2020 and formally proposed in 2023—has now reached a political agreement between EU institutions. This reform is widely recognised as the most far-reaching overhaul […]

December 12, 2025

From 9 to 11 December 2025, Brussels became the centre of gravity for Europe’s rare disease agenda

The High-Level Meeting on European Research and Innovation for Rare Diseases (HLM Rare 2025) convened senior leaders from science, healthcare, patient organisations, industry, and EU institutions with a clear objective: to move Europe’s rare disease ecosystem from fragmented progress to coordinated delivery. Led by the Brains for Brain Foundation, the meeting brought together stakeholders spanning […]

December 2, 2025

A New Milestone Brings Hope to People Living With FCS

Recently, US health regulators (the Food and Drug Administration, FDA) green‑lit a new treatment for adults with familial chylomicronaemia syndrome (FCS), a rare and often devastating genetic disease. For people who face this condition every day, the decision represents more than just a new drug on the market. It offers real hope for a life […]

November 28, 2025

FHEF November 2025 Edition Heart Beat Newsletter

November brought strong progress for FH Europe Foundation, with impactful advocacy, a successful Annual Network Meeting and growing recognition for prevention-focused projects. FH Europe Foundation News: Annual Network Meeting (Zagreb): Over 100 participants came together under the theme “Together, engaged for change!”, strengthening collaboration across the network. European Parliament Event: FHEF joined policymakers and experts […]

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