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Article: the burden of familial chylomicronaemia syndrome

Published in The Journal of Clinical Lipidology July-August 2018 this article gives the results of the global IN-FOCUS study showing how FCS affects patients.  You can read it here. https://www.lipidjournal.com/article/S1933-2874(18)30207f-1/pd
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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 it here https://www.atherosclerosis-journal.com/article/S0021-9150(18)31126-2/fulltext
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Article: Dietary recommendations

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 https://www.lipidjournal.com/article/S1933-2874(18)30208-3/fulltext
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Opportunity to add to knowledge about FCS

Study Title: A Comparison of the Natural History of Patients with and without Familial Chylomicronaemia Syndrome (FCS) What is the purpose of the study? Lack of enzymes to break down large fat particles called chylomicrons results in build-up of these particles which may have harmful consequences. The lack of enzymes is caused by genetic mutation […]
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Opportunity to join a clinical study

Have you suffered from at least one episode of LPLD/FCS-related pancreatitis? Central Manchester University Hospital is recruiting for an open label volanesorsen study. Participation requires frequent visits and close monitoring. For more details and a summary of inclusion/exclusion criteria please contact ezhil.venukumar@cmft.nhs.uk and/or bethanie.garside@cmft.nhs.uk.
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New Resource

This new resource looks at FCS and is designed to to support both patients and clinicians in areas including FCS diagnosis, symptom management, burden of disease and treatment. It can be found on the Endocrine Society’s public education arm Hormone Health Network.   You can see it here.
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Volanesorsen goes to the EMA for marketing authorisation

“Based on the positive results from the Phase 3 program with volanesorsen, I’m encouraged that for the first time, these patients may have a new therapy that can help them achieve the triglyceride reductions they need to lessen the burden of their disease and decrease their risk for pancreatitis.” Dr. Marcello Arca, Head of the […]
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UK results of IN-FOCUS survey

“FCS impacts most areas of the life of someone who has it and those close to them. It affects everything from what they can eat to their relationships with their friends and family, their employment and their sense of self-worth,” says Jill Prawer, Chair of the LPLD Alliance. “FCS is often misunderstood and misdiagnosed, and […]
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The End of Glybera

uniQure, the company that developed Glybera has made the decision not to pursue the renewal of its marketing authorization in Europe when it is scheduled to expire in October 25th of this year. That effectively means that the product will no longer be available commercially after that time. Please see the press release for futher […]
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Volanesorsen trial results

The results of the study conducted by Akcea Therapeutics look very promising for patients with FCS (LPLD). To convert triglyceride levels:- Triglyceride mg/dl = mmol/l x 88.5 Triglyceride mmol/l = mg/dl ÷ 88.5 You may need a calculator! Read the press release here
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100,000 Genomes Project

Severe hypertriglyceridemia is one of the rare conditions that qualify for the 100,000 Genomes project run by Genomics England. Find out more about the project here: Genomics England For further information email Jill   
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Have your voice heard!

Survey on the Burden of Disease Akcea Therapeutics have commissioned a survey from Trinity Partners to capture the lived experience of LPLD and the related conditions (increasingly known in America as FCS). Please take the time to do the survey. It is a very important opportunity for us all as it is the first time such […]
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Patient Advisory Meeting

We are happy to be hosting a Patient Advisory Board on behalf of Akcea Therapeutics, to be held in Birmingham on 22nd April 2017. Please ring Jill on 07517 752168 or email jill@lpldalliance.org.uk if you would like to attend or would like to discuss it further.                   Please […]
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News from America

Akcea Therapeutics are holding a series of Local Group Meetings for patients with Familial Chylomicronaemia Syndrome (FCS) with a Healthcare Professionals Panel.  These will be held throughout the US in 2017. Please email patientadvocacy@akceatx.com to learn more.  
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COMPASS STUDY

Akcea Therapeutics and Ionis have announced positive results from the COMPASS Phase 3 Study.  For the 7 patients with FCS a 73% mean reduction in triglycerides was recorded after 13 weeks of treatment.  The treatment effect continued through to the end of the 26-weeks treatment period. You can read the full press release here
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Volanesorsen

The results of the study conducted by Akcea Therapeutics look very promising for patients with FCS (LPLD). Read the press release here  
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£40 for your time

Ackea therapeutics have commissioned a survey from Trinity Partners to capture the lived experience of LPLD and the related conditions (increasingly known in America as FCS). Please take the time to do this survey on the burden of disease. It is a very important opportunity for us all as it is the first time such a […]
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Presentation to the FH Network Meeting

Jill Prawer of LPLD Alliance gave a presentation on the impact of LPLD on daily life to patient leaders representing European organisations focussing on Familial Hypocholesterolaemia.  The network, currently an informal organisation, is seeking charity status and will be chaired by Jules Paine of HEART UK. Jill’s talk was unwittingly illustrated by a completely inappropriate […]
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