Charity working to improve the lives of people affected by Familial Chylomicronaemia Syndrome (FCS), previously called LPLD Alliance
Joined February 2017
- Tweets 617
- Following 357
- Followers 256
- Likes 571
155 Photos and videos
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
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13 Dec 2023
Busy day with more than 70 MEPs attending and pledging their commitment to the Cardiovazcular Health plan #VoteHealth2024. @fhpatienteurope @EUCVHAlliance
12 Dec 2023
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
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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
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Action FCS retweeted
12 Dec 2023
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
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16 Nov 2023
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…
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6 Nov 2023
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
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6 Nov 2023
Thank you for the acknowledgement and for your support. Let’s all work together to find ways to ease the burden @fhpatienteurope
6 Nov 2023
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
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5 Nov 2023
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
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4 Nov 2023
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.
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3 Nov 2023
RT @JohnPaulCorry: My FCS day of support:
Planned having Weetabix for breakfast, only had semi-skimmed milk (would have used 50% 10g)
So 4…
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3 Nov 2023
Thanks for your support J-P! Appreciated.
30 Oct 2023
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
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Action FCS retweeted
3 Nov 2023
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
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Action FCS retweeted
3 Nov 2023
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
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3 Nov 2023
Thank you for your support! @afgcicero
3 Nov 2023
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
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Action FCS retweeted
3 Nov 2023
Such a great photo!
3 Nov 2023
#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 !
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Action FCS retweeted
3 Nov 2023
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
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Action FCS retweeted
3 Nov 2023
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
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3 Nov 2023
Fab photo of Magda - nominated as poster girl for the #FCS10gChallenge #FCSAware2023 @fhpatienteurope
3 Nov 2023
#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 !
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Action FCS retweeted
On this #FCSAwarenessDay we support all our patients, caregivers, and advocates #livingwithFCS and challenge you to take the #FCS10gFatChallenge.
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Action FCS retweeted
3 Nov 2023
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
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