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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.   Differentiating Familial Chylomicronaemia Syndrome from Multifactorial Severe Hypertriglyceridemia by Clinical Profile : Louis St L O’Dea, James […]
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Glybera gets a second chance

This is great news for patients in Canada and then, potentially, the rest of the world. Click through to see the news report.
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European Athersclerosis Society

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 rare dislipidaemias EAS
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Biohackers and Glybera

Read this article on biohackers who claim to have made Glybera for less than $7,000.  Our Chair is quoted in the article.  Read it here
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Join a study looking at the natural history of FCS

‘A Comparison of the Natural History of Patients with and without Familial Chylomicronaemia Syndrome (FCS)’.   This is a study looking at the natural history of people in the UK with FCS. It aims to gain a full picture of the impact of the condition and is run by Dr Handrean Soran at Manchester Royal […]
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ReFOCUS study

The ReFocus study looks at the effect of volanesorsen treatment on the burden associated with familial chylomicronaemia syndrome.  You can read it here:
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Volanesorsen and Triglyceride Levels in Familial Chylomicronaemia Syndrome

Published results from the Phase 3 APPROACH study evaluating WAYLIVRA® (Volanesorsen) in patients with familial chylomicronaemia syndrome (FCS) from the August 9th 2019 issue of The New England Journal of Medicine (NEJM) are available here.    
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NICE and Waylivra/Volanesorsen

The National Institute of Health and Care Excellence (NICE) will be reviewing waylivra/volanesorsen for the treatment of FCS.  Please share your experience and help us best represent the patient voice in this process. Please get in touch before 31st July 2019 In February 2019 the European Medicines Agency licenced Waylivra / Volanesorsen as “an adjunct […]
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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 here.  
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