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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 […]
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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 […]
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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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November 28, 2025

FH Europe CEO Joins WHO Expert Group on Dyslipidaemia

Magdalena Daccord, CEO of the FH Europe Foundation, has been selected by the World Health Organisation (WHO) as an expert member of the Guideline Development Group (GDG) on dyslipidaemia. She will contribute strictly in her individual and independent capacity, in full accordance with WHO rules, and not on behalf of any organisation. The WHO, the […]
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