AHC Federation of Europe

AHC Federation of Europe

[AHC Federation of Europe @AHCFE_]

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

[AHC Federation of Europe @AHCFE_]

What is AHC?
#1inamillion #AHCawareness

[AHC Federation of Europe @AHCFE_]

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

[AHC Federation of Europe @AHCFE_]

"🎧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

[AHC Federation of Europe @AHCFE_]

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

[AHC Federation of Europe @AHCFE_]

"Just a few days to go until International AHC Day. Stay tuned and take part in AHC Awareness Week next week" !

#1inamillion #ahcawareness

[AHC Federation of Europe @AHCFE_]

AHC Federation of Europe Christmas Message - https://t.co/2DE3AiDsAV

[AHC Federation of Europe @AHCFE_]

AHC Federation of Europe Newsletter - https://t.co/kSM1ZqQDNn

[Alternating Hemiplegia of Childhood UK @SupportAHCUK]

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

[Defining the Future for AHC and ATP1A3 diseases @10yearsatp1a3]

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 [email protected] for the family booking link.

@AHCkids @AHCFE_ @CureAHC

#10yearsATP1A3 #ahcawareness

[Alternating Hemiplegia of Childhood UK @SupportAHCUK]

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

[Abhishek Behl @iABehl]

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

[AHC Federation of Europe @AHCFE_]

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

[Alternating Hemiplegia of Childhood UK @SupportAHCUK]

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

[AHC Federation of Europe @AHCFE_]

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

[AHC Federation of Europe @AHCFE_]

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

[AHC Federation of Europe @AHCFE_]

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

[AHC Federation of Europe @AHCFE_]

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

[AHC Federation of Europe @AHCFE_]

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 Federation of Europe @AHCFE_]

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