Today is the 28th of February 2023 & the Rare Disease Day #RareDiseaseDay AHCFE highlights ways in which you can get involved, spread the word and generate awareness #AHCAwareness#1inaMillion#RareDisease - https://t.co/UQLtuKHBuz
Living with AHC: "What is it like to live with AHC? Over the next few days you'll get a tiny glimpse of what it's like through stories about how AHC families celebrate birthdays.
#1inamillion#ahcawareness
"๐งMake your own 1-minute version of the AHC Song!
Scan the QR code for instructions on how to participate in the AHC Song Challenge.
#1inamillion#ahcawareness
AHC SONG CHALLENGE 1. Download the materials here/from the link in bio:
https://t.co/JSz33JdccQ
AUDIO KARAOKE
AUDIO ORIGINAL
CHORDS & LYRICS SHEET
MELODY NOTES
VIDEO KARAOKE & LYRICS
VIDEO ORIGINAL & LYRICS
2. Record your version
3. Upload your song!
#1inamillion#AHCawareness
Join us in Edinburgh or online 19th-21th Oct22 for a 3day unique hybrid event incorporating: 10yrs anniversary conference to recognise the discovery of the ATP1A3 gene for AHC & ATP1A3 diseases, & the 10th Symposium on ATP1A3 in disease #10yearsATP1A3#ahcawareness#1inamillion
Don't miss this chance to meet other families and mingle with researchers and clinicians at our 10-year anniversary conference.
๐Contact your patient organisation or email [email protected] for the family booking link.
@AHCkids@AHCFE_@CureAHC#10yearsATP1A3#ahcawareness
Grateful to IAHCRC for this timeline highlighting research before/after the ATP1A3 gene discovery. Amazing to what the AHC community of families, friends & supporters have achieved on limited funding. Thank you to everyone for the
support #AHCawareness#raredisease#oneinamillion
10 years ago a collaboration of international researchers & families resulted in a genetic breakthrough & the discovery that the ATP1A3 gene was the cause of AHC in approx. 80% of cases. Link: https://t.co/sIYAVC1WjV #1inamillion#ahcawareness#raredisease
Research has shown that AHC can affect other areas of the body other than neurology. Research shows that the ATP1A3 gene is expressed in the heart also & that cardiology reviews is important for people with AHC. Link https://t.co/nhtvc25xvj #1inamillion#ahcawareness#RareDisease
Research has shown that sleep apnoea is one breathing issue in AHC. However, families report many other breathing issues & complications. More research is needed to better understand the range of breathing complications, & causes, with AHC #1inamillion#ahcawareness#raredisease
Today is AHC Research & Resources Day: we highlight the genetic breakthrough for AHC, key research that has taken place over the last 10 years & signposts you to helpful resources on AHC. #1inamillion#ahcawareness#RareDisease
AHC is a rare complex epilepsy. Most healthcare professionals will never meet anyone with AHC. Important to raise awareness of AHC & leaflets for healthcare, patients/carers. Leaflet of EpiCARE co-written by AHC parents/experts https://t.co/SbN0kbfL1T #1inamillion#ahcawareness