New role for our Chair

By Jill | 27 February 2023

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…

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Rare Disease Day

By Jill | 27 February 2023

Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers

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FCS/FH Europe webinar available now

By Jill | 6 February 2023

In the first collaboration between Action FCS and FH Europe we brought together different perspectives from medical and patient experts who shared their experiences and knowledge of FCS.

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We’ve joined the European FH Patients Network!

By Jill | 6 February 2023

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,…

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Video: FCS Information Session

By Jill | 6 October 2022

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.

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Fin

By Jill | 25 November 2021

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…

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