Association ahc18+

24/07/2026

Katrine, 25
"Obwohl es Sommer ist, bin ich weiterhin am Stricken. 😍"

24/07/2026

Katrine, eine junge Frau mit AHC, unterstützt die Forschung an der Krankheit. Wer möchte ihr mit einer Bestellung dabei helfen?

Opdatering: Alle disse disse skønne huer er solgt. Jeg fik en stor ordre fra AHC-venner i USA 😃❤️
Men glæd jer, der er nye produkter på vej 😍😍😍🇩🇰

Selv om det er forår, fortsætter jeg med at strikke. Jeg har garn i disse farver. Huer, halsedisser eller begge laver jeg gerne.
Prisen er 90 kr for en del og 175 kr for et sæt + evt porto.
Overskuddet går til AHC forskning ❤️
Send mig besked, så laver jeg dem så hurtigt helbredet tillader 😍

PS. Mange spørger, hvordan jeg strikker. Se min video i kommentaren

23/07/2026

The 14th International ATP1A3 Symposium, which brings together researchers, clinicians, families and associations from around the world around rare diseases linked to the ATP1A3 gene , is fast approaching. The French AHC Family Association (AFHA) is honoured and delighted to announce that the 14th ATP1A3 in disease Symposium will take place at the at the Pitié-Salpêtrière Hospital in PARIS, France.

Thursday, September 24, 2026, will be dedicated to a major meeting for associations and families affected by ATP1A3-related disorders, aiming to continue and enhance collaborative efforts among all our groups and families.

🎟️Tickets for the family reunion: https://www.helloasso.com/associations/association-francaise-de-l-hemiplegie-alternante/evenements/reunion-internationale-des-familles-ahc

Friday, September 25, and Saturday, September 26, 2026, will bring together leading scientists, geneticists, physicians, professors, and researchers actively working on the ATP1A3 gene to review current knowledge and present key medical research advancements.

🎟️Symposium tickets: https://www.helloasso.com/associations/association-francaise-de-l-hemiplegie-alternante/evenements/symposium-atp1a3-paris-2026

Download the Welcome letter by the 2026 Organizing Committee

These pathologies, including alternating hemiplegia (AHC) , remain largely unknown and require international scientific mobilization, which is why the symposium was created.

It takes place annually and has become a key moment for:

Presenting research advances 🔬

Sharing new therapeutic approaches 💊

Strengthening international collaborations 🤝

Giving a voice to families and associations involved on a daily basis 👩‍👧‍👦

Why is this event so important?
ATP1A3 diseases mainly affect children and cause severe symptoms: hemiplegic seizures, motor disorders, cognitive difficulties, dystonic episodes…
For families, each scientific advance represents a concrete hope.

The symposium allows for:

to advance the understanding of these complex diseases,

to accelerate research projects ,

to encourage the emergence of new therapeutic approaches ,

to increase the international visibility of these rare diseases.

📆September 24, 2026 – Family Reunion

September 25 & 26 – Symposium

📍 At the Pitié-Salpêtrière Hospital,

Edmond and Lily Safra Auditorium, Paris

83 Hospital Boulevard

75013 Paris – FRANCE

🎟️Symposium tickets: https://www.helloasso.com/associations/association-francaise-de-l-hemiplegie-alternante/evenements/symposium-atp1a3-paris-2026

🎟️Tickets for the family reunion: https://www.helloasso.com/associations/association-francaise-de-l-hemiplegie-alternante/evenements/reunion-internationale-des-familles-ahc

Text kopiert von der Seite The AHC Foundation
Die Website des Symposiums: https://www.atp1a3-disease-symposium.org/

14/06/2026

WEBINAR mit Prof. Mikati
die obligatorische Registrierung ist geöffnet (link darunter)

The results are in.

Researchers followed 115 individuals with AHC over three years to better understand how the condition changes over time and which factors may influence outcomes.

Findings from this landmark international study are helping improve our understanding of AHC today and may help shape future therapeutic research.

Join Dr. Mohamad Mikati on June 18th as he discusses what researchers learned and what these findings could mean for families, care, and future treatments.

📅 June 18th | 7:00 PM EDT

🔗 Register at the link:
https://accountingdepartment.zoom.us/meeting/register/DDXOrtUhQj6CrGrqyzjA8A #/registration

📖 The study was recently published and recognized as a top article by the Child Neurology Society. Read the publication at link: https://onlinelibrary.wiley.com/doi/epdf/10.1002/cns3.70037

14/06/2026

"Natural History of Alternating Hemiplegia of Childhood:
Vulnerabilities in Early Childhood and Predictive Factors
for Long‐Term Outcomes"

14/06/2026

Eine wichtige Publikation!
Forscher begleiteten über einen Zeitraum von drei Jahren 115 Personen mit AHC, um besser zu verstehen, wie sich die Erkrankung im Laufe der Zeit verändert und welche Faktoren den Krankheitsverlauf beeinflussen könnten.
Die Ergebnisse dieser wegweisenden internationalen Studie tragen dazu bei, unser heutiges Verständnis von AHC zu vertiefen, und könnten die künftige therapeutische Forschung maßgeblich mitgestalten.
Die Studie wurde kürzlich veröffentlicht und von der Child Neurology Society als herausragender Artikel ausgezeichnet. Lesen Sie die Publikation (Open Access) unter folgendem Link:
https://onlinelibrary.wiley.com/doi/epdf/10.1002/cns3.70037?fbclid=IwY2xjawSbaZhleHRuA2FlbQIxMABicmlkETBhbHZ5RlhkcHFoSVhnT0tmc3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHnEYV02XD-lHGaCNcy2by50hgEw39wi_VouAonbsMkCpm8KOUDVXNT7hMoBJ_aem_9b-ib04JgvveoqrI9hrzxQ

01/05/2026

Duke Children's Hospital pinpoints genetic cause and disease course of alternating hemiplegia of childhood, a rare pediatric neurological disorder

01/05/2026

Macht mit:
• Unterstützt die Petition der Lebenshilfe gegen die Kürzung der Eingliederungshilfe.
https://td0d2eeac.emailsys1a.net/c/39/9145210/7666/0/27302434/39/519082/d224ce9ddd.html
• Kommt mit zur Demo in Berlin, am 5.5.
• Schaut euch um im Netz und unterstützt die vielfältigen Aktionen, auch auf Social Media.

22/02/2026

Wie komme ich zu dem Tag der Seltenen Erkrankungen in Mainz?

18/02/2026

An interesting article. Open access.
https://link.springer.com/article/10.1186/s13023-026-04235-3
Has anybody experience with lithium?