NICE and volanesorsen

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.