Glybera gets a second chance

Watch two videos the first is about renewed hopes for Glybera.  The second is the story of the development of the therapy and how it came to taken off the market.   Read more FCS news FCS News

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New routes to clinical diagnosis of FCS

This paper explores the way in which clinical results can separate patients with FCS from patients with severe hypertriglyceridaemia – important when advising on treatment options and where genetic testing is hard to come by, or is very slow. Read Here Read more FCS news FCS News

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European Athersclerosis Society

Rare dyslipidaemias, from phenotype to genotype to management: a European Atherosclerosis Society task force consensus… Rare dyslipidaemias, from phenotype to genotype to management: a European Atherosclerosis Society task force consensus statement including a detailed section on familial chylomicronaemia syndrome, symptoms and management. Download the full review below. Download Read more FCS news FCS News

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Catherine

I was born in 1967 at the Woolwich Hospital for Mothers and Babies. Shortly after my birth, I became seriously ill and it was clear that all was by no means well. The doctors at my local hospital were unable to diagnose the problem and my condition was deteriorating fast.

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Marc

I was born in 1949 in Jonquière a city of Saguenay-Lac St-Jean that is a north east region of Québec province. As a newborn, because of FCS, I’ve been sent in emergency by plane to Montreal at Hôpital Sainte-Justine (children’s hospital). At that time the diagnosis was much more difficult than actually.

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Waylivra /Volanesorsen licenced in Europe by EMA

In February 2019 the European Medicines Agency  licenced Waylivra / Volanesorsen as “an adjunct to diet in adult patients with genetically confirmed familial chylomicronaemia syndrome (FCS) and at high risk for pancreatitis, in whom response to diet and triglyceride lowering therapy has been inadequate”. You can read more about the EMA’s decision below. Read here…

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Rax

Throughout my childhood, my diet was very strictly monitored and managed by my ultra-vigilant mother who succeeded in cooking the most delicious meals for us without a trace of oil or fat. Back in the early 80’s food labeling was unsophisticated and poorly regulated, which resulted in endless hours spent in supermarket aisles trying to figure out the true fat content of products that were often placed back on the shelf out of fear of being incompatible with our diets.

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