We had a wonderful time in Birmingham when patients, parents, and carers spent time meeting each other, with lots of learning from all the experts around us. Read our report.

Join us at the wonderful Grand Hotel in Birmingham 27/28 February 2026.
– meet others from our FCS community,
– learn more about the condition,
– discuss strategies for managing it,
– hear about possibilities for the future.

Learn more about the FCS 10g Fat Challenge

Rare Disease Day 2025 is Friday 28 February. Add your support to everyone who is affected by a rare disease. And meet our ultra-rare zebra!

Learn more about the FCS 10g Fat Challenge

Thursday 23rd November 2023, 5pm – 6pm GMT. Join this webinar for tips and tricks for adding variety and taste to the severely restricted FCS diet.

FCS Awareness Day is on Friday 3rd November 2023. We’re asking you to take the FCS 10g Challenge and to nominate others to join you, and to share your experiences to raise awareness.

Watch our webinar FCS in Children
Recorded on Wednesday 26th April 2023

Join us to hear our four speakers to learn more about managing FCS in childhood.

Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers

In the first collaboration between Action FCS and FH Europe we brought together different perspectives from medical and patient experts who shared their experiences and knowledge of FCS.