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…
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…
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…
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…
AHC UK Research Newsletter Jan 21
The highlights on this newsletter series looks at: Q & A session with Dr. Katerina Vezyroglou on the ‘AHC and ATP1A3 Natural History Study’ (YouTube Link) Highlighting to register to…
New Year Wishes
Attaching New Year wishes sent out via our AHC Newsletter on the 5th of January 2021.
AHC UK Research Newsletter & International AHC Day 18th January 2021
AHC UK Research Newsletter 18th January 2021
Alternating Hemiplegia of Childhood (AHC) Published in the Rare Revolution Magazine
The Autumn 2020 edition of the Rare Revolution Magazine was entirely dedicated to rare and complex epilepsies of which Alternating Hemiplegia of Childhood was highlighted. The article was written by…