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The UK Rare Disease Framework
Principles of the UK Rare Diseases Framework “All 4 UK nations have signed up to the UK Rare Diseases Framework and have therefore agreed to collaborate to achieve the outcomes…
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…
AHC UK Newsletter 28th February 2021
International Rare Diseases Day Dear AHC families, researchers and supporters, Today, Sunday 28th February 2021, is International Rare Diseases Day Rare Diseases Day is where the international community come together…
Prof. Sanjay Sisodiya giving an Overview of Alternating Hemiplegia of Childhood (AHC)
An Overview of Alternating Hemiplegia of Childhood (AHC) by Sanjay Sisodiya Professor of Neurology University College London Queen Square Institute of Neurology and Medical Advisor of Alternating Hemiplegia of Childhood…
GDPR for Websites
As you know, at the end of 2020, we succeeded in registering Alternating Hemiplegia of Childhood (AHC) UK as a Charity. This is a great achievement and we would like…
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…
A personal journey of an AHC family: An Introduction
Hi, I’m Lyndsey, and this is my blog about my family’s life with AHC! I thought I’d use this first post to introduce myself, so here goes. I’m a teacher…
Raise your One Finger for AHC #OneinaMillion #AHCAwarenessWeek
Great response we have got on the second day of the #AHCAwarenessWeek We asked people to show their support to all the AHC Champions but taking a picture of your…