AHC UK: Call for New Committee Members
Are you passionate about improving life for those living with AHC? Would you like to be part of a growing charity which has this aim at its heart? The AHC…
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 all the…
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’…
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…
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…