FCS in Children Webinar

Apr 6, 2023


We are very happy to bring your to attention an upcoming webinar organised by Action FCS, the newest member of our network. The webinar will focus on FCS in children and will take place on Wednesday, 26 April 2023, from 7 pm to 8 pm BST (8 pm to 9 pm CET). To register, please email info@actionfcs.org.

Please, help people with ultra-rare condition FCS and the wider community gain access to this opportunity by sharing this information with your networks.

One of the benefits of belonging to the FH Europe network is the opportunity to spread the word about your initiatives with a wider audience, increasing knowledge and understanding of the work you do and the issues faced by the patients you support. Sharing this information helps ignite ideas for strategies and solutions that can benefit others in the broader FH Europe community and is an invaluable resource for everyone. We look forward to hearing from you.

About the Webinar

This will be our first webinar focused on FCS in children.

Finian Day-Lewis, an Action FCS trustee, will talk us through the journey of illness and diagnosis for two of his three children. He will share his experience of learning the language of FCS/LPLD, the process of weaning, cooking for a family with different dietary needs/requirements, supporting a teenager with FCS, and engaging with the medical profession.

Devon Day-Lewis, Finian’s son, will share his experience of learning he has FCS, the isolation of being different from his peers, and his adolescent years with the temptations of drinking and unhealthy food.

They will both cover the experience of transitioning to adult services, how it feels for both parent and child and the strategies they have employed through the years.

Emma Footit, a Paediatric Metabolic Consultant, working in the Great Ormond St Hospital, London, UK, will discuss her clinical perspective on FCS in childhood and building relationships with children and their parents.

Rachel Skeath, a Paediatric Dietitian, also working at Great Ormond St Hospital, will talk about feeding a baby and growing child with FCS.

The webinar will be moderated by Jill Prawer, Chair of Action FCS.

There will be plenty of time for questions. We hope to see you there.

The webinar will be recorded and made available online.

FH Europe is registered as a charity; Charity number 1170731, registered in England and Wales.

FH Europe is registered as a charity; Charity number 1170731, registered in England and Wales.

FH Europe is supported by an educational grant from Amgen Limited, Sanofi, Regeneron, Akcea Therapeutics Inc. and Amryt
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