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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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