Polish Association ahc-pl

[Polish Association ahc-pl @ahc_pl]

I'm attending the 11th ECRD online on 27 June - 1 July 2022! Will you join me? https://t.co/fRl0CR7c6n

[Polish Association ahc-pl @ahc_pl]

Bardzo dziękujemy dr n. med. Małgorzacie Pawłowicz z Pododdziału Neurogenetyki i Chorób Rzadkich @SzpitalOlsztyn za doskonałe III Międzynarodowe Sympozjum Dzień Chorób Rzadkich 2022 „Podziel się swoją pasją, podziel się swoją nadzieją – razem dla zmian”

[Polish Association ahc-pl @ahc_pl]

#AHCawareness; #1inamillion

[EURORDIS-Rare Diseases Europe @eurordis]

Join the globally recognised largest patient-led rare disease event for free!

Patient advocates can still register to attend this year's ECRD conference for FREE! Apply for your fee-waiver now: https://t.co/4jB35zotOH

[Polish Association ahc-pl @ahc_pl]

9. Sympozjum
ATP1A3 IN DISEASE
Bardzo interesujący program
Pierwszy dzień:

[Polish Association ahc-pl @ahc_pl]

#ATP1A3 Choroby związane z atp1a3 -related diseases on Facebook

[Polish Association ahc-pl @ahc_pl]

Our new page on Facebook:
Choroby związane z ATP1A3 -related diseases
https://t.co/gVhpsvj80a
#atp1a3

[Parkinsonism & Related Disorders @ParkinsonismD]

Untangling the complicated web of #ATP1A3 mutations. #RDP #AHC #CAPOS #RECA #EE #ROA #FIPWE #COS #ASD #PNKD #PED @ELSNeurology Log in to: https://t.co/1bhOn8U7OE

[Polish Association ahc-pl @ahc_pl]

Tomorrow's webinar organized by Epicare ERN
will be presented by Dr. Eleni Panagiotakaki and Dr. Gaetan Lesca at 17:00 CET.
The webinar will focus on Alternating Hemiplegia of childhood (AHC).
Registration is mandatory: https://t.co/IqNmIyduy5

[ERDERA @ERDERA_org]

@ERN_RND #webinar for #RareDiseaseDay on "Improving care for rare disease patients in Europe" looking at different perspectives: from the clinician to the patient view. @rarediseaseday

📅 23 February, 3-4pm CET
Sign up 👉 https://t.co/kA2200CPGt

[RARE Revolution Magazine® @RareRevolutionM]

AHC is a life-long neurological condition, although symptoms typically first present before 18 months of age. There is no effective treatment for AHC - more research is needed.

https://t.co/Jx9kzzNd6D

#RareDisease #OneinaMillion #AHCawareness #tuesdaytakeover

[Abhishek Behl @ABehl_]

Join @SupportAHCUK on a zoom Question and Answer chat with Dr Katerina Vezyroglou on Friday 27th November at 8pm (GMT) on her research ‘AHC and ATP1A3 Natural History study’. For more info please read our latest AHC UK Research Newsletter - https://t.co/CKFictGLLf

[Alternating Hemiplegia of Childhood UK @SupportAHCUK]

We still have far to go in understanding AHC for everyone (with and without the gene). We also desperately need an effective treatment for AHC! #oneinamillion #raredisease #AHCAwareness

[Alternating Hemiplegia of Childhood UK @SupportAHCUK]

Prior to 2012 & ATP1A3 discovery, was uncertain what caused AHC. Once the gene was discovered, 2014 a consortium was established International AHC Research Consortium (IAHCRC) This contributed to research individually & the search & investigate AHC. #AHCawareness #oneinamillion

[Alternating Hemiplegia of Childhood UK @SupportAHCUK]

Grateful to IAHCRC for the timeline before & after ATP1A3 gene discovery. Amazing to see what AHC families, friends & supporters have achieved on meagre amounts of fund. Thank you to everyone for supporting our fight & to END AHC #AHCawareness #raredisease #oneinamillion

[RARE Revolution Magazine® @RareRevolutionM]

Today we highlight all our AHC warriors - the children & adults with AHC. They're our inspiration to keep searching for an effective treatment for AHC.

#RareDisease #OneinaMillion #AHCawareness #tuesdaytakeover