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’…
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…
‘AHC and ATP1A3 Natural History Study’ Q&A session with Dr. Katerina Vezyroglou
Thank you to everyone who joined in this helpful Question & Answer session in November of last year with Dr. Katerina Vezyroglou on her research work. As promised, we have included the link to the recorded zoom session for those of you who were unable to attend the event. We hope you find this helpful and as in the session, Dr. Vezyrouglou is very happy to hear from anyone who would like to ask any more questions. All questions are welcome. As discussed in the zoom chat, this project also feeds into the OBSERV AHC natural history study involving many international centers.
Emergency Care Aid for Alternating Hemiplegia of Childhood Patients
A REFERENCE GUIDE FOR MEDICAL PROFESSIONALS We would like to thank our sister AHC Charity organisation (AHCF) in the United States for this attached document for parents and medical professionals.…