Massive congratulations and thanks to Fiza Javed

We’re delighted to announce that our Chair, Jill Prawer, will be joining FH Patients Europe as Rare Disease Project Manager on Rare Disease Day 2023!  In her role Jill will be responsible for patient advocacy and patient support projects focusing on rare familial lipid conditions – HoFH and FCS. “I’m really excited to be working…

We’re delighted to announce that we have joined the European FH Patients Network. The European FH Patient Network is a charity that is actively working to improve Europe-wide awareness, understanding, and access to diagnosis and treatment of inherited lipid conditions, (specifically FH, HoFH, Lp(a), FCS), so that all those impacted receive optimal treatment and support,…

We were happy to host Fiza Javed who gave us a wide-ranging presentation on FCS. Fiza covers many aspects of FCS including diagnostics, understanding lipids, and previously studied and current medications and takes the time to explain the medical terms which can often be so confusing.

Read the Rare Revolution Spotlight Edition on Familial Chylomicronaemia Syndrome, published to celebrate FCS Awareness Day.

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…

  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…

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…

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.   Read more FCS news FCS News

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. Read Here Read more FCS news FCS News