Charity working to improve the lives of people affected by Familial Chylomicronaemia Syndrome (FCS), previously called LPLD Alliance
UK
Joined February 2017
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Action FCS retweeted
Thank you Prof Lucy Chappell for highlighting our @NIHRcommunity funded project to build a patient led Rare Disease Research Network platform - “a community led approach to rare disease research’ at the @RDRUKHub conference today with @plrh_cambridge
Busy day with more than 70 MEPs attending and pledging their commitment to the Cardiovazcular Health plan #VoteHealth2024. @fhpatienteurope @EUCVHAlliance
We’re delighted to be at the European Parliament today with @EUCVHAlliance to meet with MPs, along with patient ambassadors, seeking support for an EU Cardiovascular Health Plan #Cardiovascular disease must be the public health campaign of the next term #VoteHealth2024
Action FCS retweeted
Thank you @ManfredWeber for stopping by our exhibit!
Cardiovascular disease is Europe's leading cause of death.
Members of the Parliament, join us this week to learn more about how you can help improve cardiovascular health across Europe!
#VoteHealth2024
Action FCS retweeted
Advocating for a crucial cause in Strasbourg: supporting the introduction of a Cardiovascular Health Plan across Europe. Cardiovascular disease impacts 60 million lives annually. Vote Cardiovascular Health 2024!
@EUCVHAlliance
@EPPGroup
@psdparleuropeu
@ppdpsd
Join our practical webinar focusing on Familial Chylomicronaemia Syndrome (FCS) providing tips and tricks for eating well within the dietary recommendations of >20g fat per day, restricted sugars, no alcohol. #FCSAware2023 @fhpatienteurope
Register here us06web.zoom.us/webinar/regi…
Fantastic response to the #FCS10gFatChallenge. Big thanks to those who took the Challenge, but also to those who commented, shared and liked the posts. Raising awareness is key to #diagnosis Understanding its impact highlights support that's needed @fhpatienteurope @society_eas
Thank you for the acknowledgement and for your support. Let’s all work together to find ways to ease the burden @fhpatienteurope
Familial Chylomicronemia Syndrome (#FCS) isn't just about physical symptoms; it often starts with navigating an extremely strict diet. These individuals face unique dietary challenges daily. Let's acknowledge their resilience and show our support! #FCSAwarenessDay #FCSAware2023
Really looking forward to meeting the FH (Familial Hyperlidiaemia) community again, this year including others with FCS.
This year we’ll be there with our chair as part of the FH Europe Foundation team! #EngagedforChange @fhpatienteurope
Thank you @ChyrelLi for your support for our community - it is much appreciated !
On FCS Awareness day - I've spent the day taking on the #FCS10gFatChallenge.
It has deepened my empathy and reinforced the need for awareness and research in this field. It's a cause worth championing, and I hope we can learn more about FCS and support those living with it.
Action FCS retweeted
My FCS day of support:
Planned having Weetabix for breakfast, only had semi-skimmed milk (would have used 50% 10g)
So 4 x Granny Smith apples over the day. 1.5 Litres water, some OJ. Then a lovely Chana Dall dry fried + Guinness Zero, it is Friday.
@fhpatienteurope #FCSAware2023
Thanks for your support J-P! Appreciated.
Familial Chylomicronaemia Syndrome is a rare & serious condition. People with #FCS are recommended to eat <20g fat per day, restrict simple sugars + drink no alcohol to <risk of pain/pancreatitis. Many eat less than 10g fat per day. fhef.org/news/fcs-awareness-… #fcsaware2023
Action FCS retweeted
Supper of gnocchi, passata, courgette, onion, garlic, shitake mushroom, herbs and a bit of low-fat ham. Yum! >1.5g fat. Had another coffee, 2 apples and a satsuma, a crumpet and marmelade (2.1g fat). Day total >8g fat #FCS10gFatChallenge #FCSAware2023 @ActionFCS @fhpatienteurope
Action FCS retweeted
In the FCS awareness day, how to break hunger while eating less than 10 gr fats per day? Take one or more nice coffees with a drop of oats "milk" and sweetened with stevia extracts... near zero fats!
#FCS10gFatChallenge #FCSAware2023 @fhpatienteurope @actionfcs
@FedericaFogacci
Thank you for your support! @afgcicero
How to close the FCS awareness day eating < 10 gr fats per day? Rosted corn with a light Tzatziki prepared with zero fat greek-like yogurt and some salads .... my dear poor patients!
#FCS10gFatChallenge #FCSAware2023 @fhpatienteurope @actionfcs
@FedericaFogacci
Action FCS retweeted
Such a great photo!
#FCSAwarenessDay has been promoted today also in #Croatia #Zagreb at the 14th Croatian Congres on Atherosclerosis, with a huge pic of our CEO @magdadaccord promoting #FCS10gFatChallenge !
Action FCS retweeted
Today is FCS Awareness Day and I accepted the invitation by @fhpatienteurope to join the #FCS10gFatChallenge and support the FCS community to raise awareness and knowledge about the impact of #FCS has on people living w/ this condition
#EASSoMe #FCSAware2023 @actionfcs
Action FCS retweeted
Fabulous to have you on board for this impactful- real life campaign @FedericaFogacci ! By engaging clinicians & researchers to experience the challenge of a super low fat diet they better grasp the daily challenges people with #FCS & … #HoFH face EVERY DAY beyond eating low fat
Fab photo of Magda - nominated as poster girl for the #FCS10gChallenge #FCSAware2023 @fhpatienteurope
#FCSAwarenessDay has been promoted today also in #Croatia #Zagreb at the 14th Croatian Congres on Atherosclerosis, with a huge pic of our CEO @magdadaccord promoting #FCS10gFatChallenge !
Action FCS retweeted
On this #FCSAwarenessDay we support all our patients, caregivers, and advocates #livingwithFCS and challenge you to take the #FCS10gFatChallenge.
Action FCS retweeted
Learn more about #FCS in this video series ( Sever Dyslipidemia in LATAM)
Today is #FCSAwarenessDay! IAS' course "Severe Dyslipidemias in LATAM: Confronting the Future" has a module with Maria Cristina Izar, MD, that focuses on the diagnosis and natural history of this rare disease.
Watch it now and help raise awareness: bit.ly/40oHLZ5 #FCS
