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NICE and volanesorsen

Update July 2019

In February 2019 the European Medicines Agency Following 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 here.

The National Institute of Health and Care Excellence (NICE) will be evaluating volanesorsen for the treatment of FCS.  Please share your experience and help us best represent the patient voice in this process.  Please get in touch before 31st July 2019.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

June 2018

The National Institute of Health and Care Excellence (NICE) will be evaluating volanesorsen. They will be deciding whether, if the medicine is approved by the European Medicines Agency, the NHS will pay for the drug and make it available to patients.  We need to gather evidence to demonstrate the impact that FCS has on our lives so that whatever decision is made it is based on a clear understanding of the condition,  Please add your voice to the evidence we submit.  We need your experience by first week of June 2018..