Positive decision on Volanesorsen from NICE

NICE have issued a positive Final Evaluation Document (FED) for Volanesorsen for the treatment of FCS for routine care on the NHS in England. “Volanesorsen is recommended as an option for treating familial chylomicronaemia syndrome in adults with genetically confirmed familial chylomicronaemia syndrome who are at high risk of pancreatitis, and when response to diet…

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We’ve changed our name!

  We’ve been talking about this for a long time now, so we’re really pleased to have finally changed our name.  Previously known as LPLD Alliance we hope our new name captures the essence both of managing the condition on a daily basis, and the work of the charity on behalf of people affected by…

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COVID-19

With the developing corona-virus pandemic, patients with FCS may be wondering about their well-being. In line with everybody else, FCS patients should follow government guidance which is being continually updated as the situation develops, and can be found here. Patients who also have diabetes must pay attention to the diabetes-specific advice.  This page from Diabetes…

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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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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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Article: Guidelines to diagnose FCS

Published in Athersclerosis, and available online in June 2018:  Identification and diagnosis of patients with familial chylomicronemia syndrome (FCS):  Expert panel recommendations and a proposal of an ‘FCS score’. Read here Read more FCS news FCS News

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Genetic testing to be centralised

This is seen as a positive development as it removes the potential reluctance to give a referral because of cost saving measures by the GP and Clinical Commissioning Group (CCG).  LPLD is included in the list of conditions to be tested for. This is seen as a positive development as it removes the potential reluctance to give…

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