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 and triglyceride- lowering therapy has been inadequate." The medicine is to be used in line with the marketing authorisation "as an adjunct to diet".

Read the NICE decision here

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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 FCS.

We hope you like our new website!

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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 UK is helpful

 

In order to minimise symptom, patients will need to be even more careful about their food choices to minimise the symptoms of FCS. However, the usual advice around seeking urgent attention in the event of symptoms suggestive of pancreatitis remain, even if local services are stretched.

Living with any rare disease can feel isolating and we know that many FCS patients can experience episodes of depression related to their disease. With social distancing and further restrictions on social contact very probable, it is very important that patients find ways of managing their mental well-being. Keeping in touch with others, by telephone or on one of the many video apps, is very important. Exercising can also improve mood and there are many online apps to take you through exercise routines at home.

For patients currently using volanesorsen, arrangements about attending hospitals or GP surgeries for blood tests for platelet monitoring may need to change. Your local services will update you.

Stay safe and keep in touch.

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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.  

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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.

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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.

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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.

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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’.

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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 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.

National Genomic 2018/2019 Genetic Test Directory FAQs

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Published in the Journal of Clinical Lipidology (April 2018) this article ‘Familial chylomicronemia syndrome: Bringing to life dietary recommendations throughout the life span’ reports on best practices and develops comprehensive dietary guidelines for nutrition therapy in patients with FCS.

Published in the Journal of Clinical Lipidology (April 2018) this article ‘Familial chylomicronemia syndrome: Bringing to life dietary recommendations throughout the life span’ reports on best practices and develops comprehensive dietary guidelines for nutrition therapy in patients with FCS.

Read it here

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