Action FCS

Charity working to improve the lives of people affected by Familial Chylomicronaemia Syndrome (FCS), previously called LPLD Alliance

[Cambridge Rare Disease Network (CamRARE) @camraredisease]

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

[Action FCS @ActionFCS]

@louisedietitian @uhbtrust @afocoa @heartukcharity Fabulous development !

[Action FCS @ActionFCS]

Busy day with more than 70 MEPs attending and pledging their commitment to the Cardiovazcular Health plan #VoteHealth2024. @fhpatienteurope @EUCVHAlliance

[FH Europe Foundation @fhpatienteurope]

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

[European Alliance for Cardiovascular Health (EACH) @EUCVHAlliance]

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

[Maria Graça Carvalho @mgracacarvalho]

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

[Action FCS @ActionFCS]

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 https://t.co/8J7CEdypGf

[Action FCS @ActionFCS]

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

[Action FCS @ActionFCS]

Thank you for the acknowledgement and for your support. Let’s all work together to find ways to ease the burden @fhpatienteurope

[European Atherosclerosis Society @society_eas]

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

[Action FCS @ActionFCS]

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

[Action FCS @ActionFCS]

Thank you @ChyrelLi for your support for our community - it is much appreciated !

[شيرَل 🇱🇧 @ChyrelLi]

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 @ActionFCS]

@magdadaccord You tried! And now are super aware of what FCS patients face daily. Spontaneity is very difficult to navigate. Many of us might chose to decline the invitation rather than go and be tempted by what we can’t eat or drink #FCS10FatChallenge @fhpatienteurope @ActionFCS #FCSAware2023

[Action FCS @ActionFCS]

@FedericaFogacci @fhpatienteurope Thanks for your support @FedericaFogacci

[J-P @JohnPaulCorry]

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

[Action FCS @ActionFCS]

Thanks for your support J-P! Appreciated.

[J-P @JohnPaulCorry]

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.  https://t.co/l6rluRKmDD #fcsaware2023

[Jill Prawer @JillP358]

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

[Arrigo F.G. Cicero @afgcicero]

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

[Action FCS @ActionFCS]

Thank you for your support! @afgcicero

[Arrigo F.G. Cicero @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

[Jill Prawer @JillP358]

Such a great photo!

[Federica Fogacci @FedericaFogacci]

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

[FH Europe Foundation @fhpatienteurope]

@FedericaFogacci @ActionFCS 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