AHC Federation of Europe
Joined November 2021
- Tweets 57
- Following 33
- Followers 28
- Likes 18
43 Photos and videos
28 Feb 2023
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 - mailchi.mp/68cc024c6019/ahcf…
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16 Jan 2023
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
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16 Jan 2023
"🎧Make 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
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16 Jan 2023
AHC SONG CHALLENGE 1. Download the materials here/from the link in bio:
bit.ly/ahc-chords
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
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16 Jan 2023
"Just a few days to go until International AHC Day. Stay tuned and take part in AHC Awareness Week next week" !
#1inamillion #ahcawareness
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AHC Federation of Europe retweeted
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
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AHC Federation of Europe retweeted
Don't miss this chance to meet other families and mingle with researchers and clinicians at our 10-year anniversary conference.
👉Contact your patient organisation or email support@ahcuk.org for the family booking link.
@AHCkids @AHCFE_ @CureAHC
#10yearsATP1A3 #ahcawareness
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AHC Federation of Europe retweeted
Today is the 28th of February 2022 and it is International Rare Disease Day #rarediseaseday2022 #RareDiseaseDay we at AHC UK are delighted and proud to support @rarediseaseuk #1INAMILLION #AHCAwareness #RareDisease
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AHC Federation of Europe retweeted
28 Feb 2022
Today is the 28th of February 2022 and it is International Rare Disease Day #rarediseaseday2022 #RareDiseaseDay we at AHC UK are delighted and proud to support
@rarediseaseuk
#1INAMILLION #AHCAwareness #RareDisease
Today is the 28th of February 2022 and it is International Rare Disease Day #rarediseaseday2022 #RareDiseaseDay we at AHC UK are delighted and proud to support @rarediseaseuk #1INAMILLION #AHCAwareness #RareDisease
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28 Feb 2022
Today is the 28th of February 2022 and it is International Rare Disease Day #rarediseaseday2022 #RareDiseaseDay we at AHC UK are delighted and proud to support
@rarediseaseuk
#1INAMILLION #AHCAwareness #RareDisease
Today is the 28th of February 2022 and it is International Rare Disease Day #rarediseaseday2022 #RareDiseaseDay we at AHC UK are delighted and proud to support @rarediseaseuk #1INAMILLION #AHCAwareness #RareDisease
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20 Jan 2022
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
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20 Jan 2022
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: bit.ly/359AAv9 #1inamillion #ahcawareness #raredisease
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20 Jan 2022
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 bit.ly/3tK5WTl #1inamillion #ahcawareness #RareDisease
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20 Jan 2022
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
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20 Jan 2022
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
20 Jan 2022
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 bit.ly/3GLT16Y #1inamillion #ahcawareness
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