Latest news

October 20, 2023

FCS Awareness Day 2023

The first Friday of November is Familial Chylomicronaemia Syndrome (FCS) Awareness Day. This year we are delighted to be working in partnership with our UK-based network member, Action FCS, to raise awareness of FCS, and to amplify the under-estimated impact that living with the condition has on the lives of patients and those around them. […]
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October 15, 2023

Living with HoFH – Maria´s Story

A Story of Resilience, Education, and Advocacy My name is Maria Nassif, I’m 30 years old, Lebanese living in France. I got diagnosed with HoFH when I was 3 years old when xanthomas started showing up on various parts of my body - elbows, wrists, knees, you name it. I have a very high LDL […]
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October 10, 2023

A patient-centred vision for unmet medical need

FH Europe Foundation Ambassadors have collaborated as part of the European Patients’ Forum (EPF) Taskforce on unmet needs, specifically the definition of 'unmet medical needs' and how it will shape the future of healthcare. This urgent and important issue arose in the context of the reform of the EU pharmaceutical legislation. In the spring of […]
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October 8, 2023

Advocating for FH and early screening in Italy

On 6th October 2023, FH Europe Foundation Community Engagement Manager, Emma Print, was invited to speak at the Italian Ministry of Health as part of AISC’s 9th Annual Congress. The topic was “FH - What is the Real and Undetected Issue? How can we Raise Awareness?” Emma spoke to an audience of 250 patients and […]
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