Action FCS

30/03/2026

The report about our recent event is now up on our website, along with lots of lovely photos. You can read it here www.actionfcs.org

The event was on Rare Disease Day and we named our rare zebra FranCiS. Pictured below is Elisete and FranCiS modelling Rare but Mighty beanies which were kindly donated by Michal and Karonlina, members of our community.

24/03/2026

We had a great time at our event in Birmingham on Rare Disease Day and hope to do another one next year!

02/02/2026

We're extending our registration deadline for our Patients, Parents, and Carers event in Birmingham. If travel expenses are a problem for you, please let us know.

It's a great chance to meet your community and be around others who understand without an endless explanation. Don't miss the opportunity!

Email [email protected] to get your registration form.

If you're unable to attend, you're welcome to join online - just let us know and we'll send you a link nearer the day.

06/12/2025

We're delighted to have organised an event for patients, parents and carers in Birmingham on 27/28 February 2026. If you are a health care professional, please alert your patients!

- Places are limited and will be allocated on a first-come, first-served basis with preference given to patients and carers resident in the UK.
- For full details and the registration form, please email [email protected]

Register early to ensure your place. We hope to see you there!

30/11/2025

Survey closes today! Add your voice https://forms.microsoft.com/e/EXHDUqrj57

25/11/2025

IMPORTANT to both patients and caregivers

If we want the best decision on new medicines for our community in the UK (a decision that influences other countries), it's vital that we share our experiences of living with FCS using the survey below. Your responses help us, as the patient organisation, to best represent the impact FCS has on us all. Patients and carers worldwide are invited to participate.

The closing date is 30 November so there's still time to add your voice.

Your participation can have a direct impact on decisions made. Lets make sure they're the right ones!

Take part now: https://forms.microsoft.com/e/EXHDUqrj57

If you're a healthcare professional reading this - please remind your patients to take part.

13/11/2025

Still time to participate if you haven’t yet.

Share your experience! 🗣️

Are you or someone close to you affected by familial chylomicronaemia syndrome (FCS)?

Share your experience in the FCS survey co-developed between Action FCS and Metabolic Support UK. This will be used to support a submission to the NICE, about two new FCS treatments.

👉 Take part now: https://forms.microsoft.com/e/EXHDUqrj57

07/11/2025

Are you taking the FCS 10g Challenge?
Or if not, just take note of the fat in the food around you. Remember, there is no 'healthy' fat in FCS!
How would you manage limiting your daily intake to 10g fat every day, and live with the threat of pancreatitis which could send you to hospital, or worse.

HEART UK FH Europe - The European FH Patient Network Beacon for Rare Diseases Metabolic Support UK Healthwatch Kingston

05/11/2025

Ever wondered what you CAN eat on a ? Our handy, dietitian approved, downloadable guidance, helps you to understand what's ok and what should be avoided. Useful if being catered for too! People are recommended to eat less than 20g fat per day, but many of us find that 10g is the better target.https://www.actionfcs.org/wp-content/uploads/2020/09/Dietary-Guidance-for-FCS.pdf HEART UK FH Europe - The European FH Patient Network Metabolic Support UK Beacon for Rare Diseases Healthwatch Kingston

04/11/2025

We all live the FCS 10g Fat Challenge all day, every day. Could you do it for just one?

HEART UK FH Europe - The European FH Patient Network Beacon for Rare Diseases Cambridge Rare Disease Network

04/11/2025

Did you know?

People living with Familial Chylomicronaemia Syndrome (FCS) face not only high triglyceride levels but also a higher risk of developing diabetes over time.

Because the pancreas is under constant strain from repeated inflammation and fat accumulation, it can lead to insulin insufficiency and elevated blood sugar levels, which in turn, are converted into even more triglycerides.

It’s a vicious cycle that highlights just how complex and demanding life with FCS can be. Awareness is the first step to better understanding, earlier diagnosis, and improved care.

👉 Learn more about FCS and how you can help raise awareness: https://fhef.org/fcs-awareness-day/


Action FCS

03/11/2025

They are taking the FCS 10g Fat Challenge. Will you? Metabolic Support UK Beacon for Rare Diseases Gene People UK HEART UK FH Europe - The European FH Patient Network