AHC Federation of Europe (AHCFE) Ukraine Statement
AHC UK is a member of the AHC Federation of Europe (AHCFE) and we attach a statement from the federation about AHC families in Ukraine. Our hearts go out to…
Save the Date: AHC UK Virtual Family Meeting
Welcome everyone to our April newsletter edition. In this, we discuss giving you an announcement about SAVE THE DATE and we look forward to seeing you all virtually. Many thanks…
Distinct neurological disorders with ATP1A3 mutations
Erin L Heinzen, Alexis Arzimanoglou, Allison Brashear, Steven J Clapcote, Fiorella Gurrieri, David B Goldstein, Sigurður H Jóhannesson, Mohamad A Mikati, Brian Neville, Sophie Nicole, Laurie J Ozelius, Hanne Poulsen,…
Samuel’s Marathon Updates: His running post
This is a guest post sent by Rachel who is mummy to little Samuel and is keeping everyone informed (The first post) of the amazing marathon Samuel is undergoing and…
Newsletter Update: 5th March 2021
Attaching below is the PDF version of AHC UK’s Newsletter 5th March 2021. The newsletter talks about thanks to everyone who contributed to International Rare Disease Day (28th of Feb’…
SAVE THE DATE: 22nd to 24th Sept 2021 (Stockholm, Sweden) for the 9th Symposium on ATP1A3 in Disease
Thank you to all at the ATP1A3 in Disease Symposium Organizing Committee for sending us this invitation via email. Please find below details and will be great if you all…
Samuel Runs for our AHC Champions: This is his Running Blog
This is a guest post sent by Rachel who is mummy to little Samuel and is keeping everyone informed of the amazing marathon Samuel is undergoing and all the fundraising…
Treat yourself & support us with a ‘Rare Coffee & Cake’ for Rare Disease Day 2021
Today is International Rare Disease Day 2021 Why don’t you enjoy today with a ‘Rare Treat’. Can you donate the cost of Coffee & Cake for all the AHC Rare…
RHOBTB2 mutations expand the phenotypic spectrum of alternating hemiplegia of childhood
Sara Zagaglia, Dora Steel, S Krithika, Laura Hernandez-Hernandez, Helena Martins Custodio, Kathleen M Gorman, Aikaterini Vezyroglou, View ORCID Profile Rikke S Møller, Mary D King FRCPCH, Trine Bjørg Hammer, View…
Our journey & getting the AHC diagnosis
Every AHC family I’ve spoken to has a diagnosis story, and I thought I’d share ours with you. We got Ruby and Sophia’s diagnosis in July 2019, when they were…
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