Online Connection with Your Community

The ECD Global Alliance hosts virtual online chats each month for anyone in the ECD community. This includes patients, caregivers/carers, family members, medical personnel, researchers, etc.

For those who register with the ECD Global Alliance, you will receive an email announcing each chat session relevant to your role.  If you have not yet registered with the group, we recommend you do so here to stay connected and informed.

The chats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues, treatments, tests, knowledgeable doctors, symptoms, treatment side effects, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other.

Previously, the ECDGA conducted typed, live online chats for the community. Summaries of previous chat sessions were compiled and archived at the bottom of this page.

Please read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar.

NOTE: Check your time zone here: Time Zone Converter.

There will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy.

 

English-Speaking Groups

The following group chats will be made available in 2024: ECD Patients, ECD Caregivers, ECD Grief Group.

Register Here	Register Here
Register Here

 

The new virtual chat calendar for 2024 will be released as soon as possible. You can check back here, or sign up for email alerts by joining the appropriate group here. If you are interested in the Grief Group, please contact us directly here.

 

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International Groups

German Chats

Register Here

 

Australian and New Zealand Community

Register Here

 

 

 

 

 

 

 

 

 

Chat virtual en español

CUÁNDO: 13 de junio de 2023 a las 1:00 PM – Comenzamos la hora Central E.U. (CST) 

¡Gratis!

DÓNDE: Online, usando la plataforma Zoom

(NOTA: NO se requiere una cuenta de Zoom para asistir, pero deberá registrarse para recibir el enlace para unirse. Solo un dispositivo puede iniciar sesión usando el enlace, por lo tanto, cada persona debe registrarse).

Por favor si es tu primera vez usando el Zoom nos gustaría que practicaras y te familiarizaras antes que todos nos reunamos.  Aquí está el You Tube para aprender el Zoom: https://youtu.be/TA8m-mzcbNs.

QUIÉN: Pacientes, familiares, cuidadores y amigos de habla hispana.

¡Revise la Política de participación virtual antes de unirse a la reunión!

REGÍSTRESE AQUÍ: https://us02web.zoom.us/meeting/register/tZMsceutqjIqEtda72AgTrkx5t2AS9HP88yo

Lea aquí cómo cambiar su página de idioma de zoom a español.

 

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Peer Chat en Français

QUAND : Vendredi 16 juin 2023 à 15h00 CEST Heure de Paris

Convertisseur de fuseau horaire pour l’endroit où vous vivez: https://www.convertirheures.com/

OU : En ligne, en utilisant la plateforme Zoom

(REMARQUE : un compte Zoom n’est PAS requis pour participer, mais vous devrez vous inscrire afin de recevoir le lien qui vous donnera accès à la réunion . Un seul appareil peut se connecter à l’aide du lien, donc chaque participant doit s’inscrire.)

Si c’est la première fois que vous utilisez Zoom, merci de regarder cette vidéo (YouTube) pour vous familiariser avec la plateforme avant notre réunion. Autres vidéos d’aide en français.

QUOI : Il s’agira d’une réunion communautaire virtuelle informelle au cours de laquelle nous pourrons parler, écouter et rencontrer d’autres membres de la communauté.

Les sujets de discussion peuvent aborder l’annonce du diagnostic et de quelle manière la maladie affecte votre vie. Quels  sont les symptômes dont vous souffrez ? Quelles questions aimeriez-vous poser ?

QUI : Les patients, les membres de la famille, les soignants et les médecins qui parlent français sont les bienvenus.

PRIX : gratuit!

INSCRIVEZ-VOUS ICI : https://us02web.zoom.us/meeting/register/tZEtf-CvqToqEtdklwMrsuIithz160oKyI0r

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Chat virtuale in italiano

QUANDO: mercoledì 14 giugno 2023 alle 19:00 ora italiana

Questo sito Web di Time Zone Converter ti aiuterà a confermare l’ora corretta della riunione per il luogo in cui vivi:
https://dateful.com/time-zone-converter.

DOVE: Online, utilizzando la piattaforma Zoom. (NOTA: NON è richiesto un account Zoom per partecipare, ma dovrai registrarti per ricevere il link per partecipare. Potrai accedere con un solo un dispositivo utilizzando il link, di conseguenza ogni persona dovrà registrarsi.)

COSA: Questo sarà un incontro virtuale informale in cui potremo parlare, ascoltare e incontrarci con gli altri nella comunità.

Nessun costo!

REGISTRATI QUI: https://us02web.zoom.us/meeting/register/tZwsfu-uqzguG9ZM2eof2eZPALAHT6o-bSSQ

Si prega di rivedere il regolamento prima di partecipare alla riunione virtuale.