Action FCS joins the Network

Jan 19, 2023

Welcome to the new member of the Network, Action FCS from the UK, who support and advocate for people with familial chylomicronaemia syndrome (FCS).

As we kick off the new year with a long awaited webinar on FCS, we have some exciting news to share. After a very successful FH Europe Annual Network meeting, where Jill Prawer represented the FCS community, both organizations came to an agreement about joining forces and together supporting people living with this rare inherited lipid condition. And so, on Jan 19, 2023, Action FCS became the 31st member of the Network and the first one solely dedicated to FCS.

“This is an important milestone for FH Europe. For years our Network members have been working on supporting people living with this [FCS] very serious and ultra-rare condition without or little help from FH Europe. But this is about to change, and we hope that with the experience and the expertise Action FCS brings to the Network we will be more effective in responding to those community needs across Europe, increasing awareness and delivering more education with the help of a dedicated FCS Ambassadors Programme” said Magdalena Daccord, FH Europe’s Chief Executive.

Action FCS was founded in July 2015 and registered with the Charity Commission in March 2016, charity number 1165873. Formerly called LPLD Alliance, the charity was founded by a patient along with a small board of trustees.

Action FCS wants everyone with FCS to live as full and healthy a life as possible. To do this they raise awareness of, and educate about the patient experience of the condition. Action FCS run virtual events throughout the year and their annual FCS Awareness Day on the first Friday in November. Action FCS support patients and those close to them through their Facebook group FCS Community, and advocate for excellent care and new medicines, representing the patient voice in medicines regulatory processes.

Action FCS is run by its board of trustees who are all volunteers.

”This is an exciting development for Action FCS. We’re delighted to be joining the FH Europe Network and to maximising the opportunities to increase awareness and educational opportunities for FCS patients across all of Europe.” Jill Prawer, Chair of Action FCS

You can watch our first joint webinar on FCS below:

To learn more about Action FCS and FCS please visit, while a dedicated FH Europe’s page is being updated.

FH Europe is registered as a charity; Charity number 1170731, registered in England and Wales.

FH Europe is registered as a charity; Charity number 1170731, registered in England and Wales.

FH Europe is supported by an educational grant from Amgen Limited, Sanofi, Regeneron, Akcea Therapeutics Inc. and Amryt
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