Video: FCS Information Session

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 More

Fin

I am the father of three boys, two of whom have been diagnosed with Lipoprotein Lipase Deficiency (FCS), one born in 2000 and the other in 2006, our oldest son doesn’t have the condition. We discovered the condition when our youngest son was 3 months old. He had started to vomit his feeds (he was…

Read More

Virtual meeting

Tuesday October 20th, 7pm-8.30pm
Meet Dr Charlotte Dawson, consultant in metabolic medicine, Queen Elizabeth Hospital, Birmingham.

Read More

Positive decision on Volanesorsen from NICE

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…

Read More