News
Video: FCS Information Session
We were happy to host Fiza Javed who gave us a wide-ranging presentation on FCS. Fiza covers many aspects of FCS including diagnostics, understanding lipids, and previously studied and current medications and takes the time to explain the medical terms which can often be so confusing.
Read MoreSpotlight Edition on FCS
Read the Rare Revolution Spotlight Edition on Familial Chylomicronaemia Syndrome, published to celebrate FCS Awareness Day.
Read MorePositive 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…
Read MoreWe’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…
Read MoreCOVID-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…
Read MoreGlybera 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
Read MoreNew 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
Read MoreEuropean 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
Read MoreWaylivra /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…
Read MoreArticle: 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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