Connect Through Social Media

  •   Instagram
    Instagram is a social networking app made for sharing photos and videos from a smartphone. Similar to Facebook or Twitter, everyone who creates an Instagram account has a profile and a news feed. When you post a photo or video on Instagram, it will be displayed on your profile.
    ECDGA handle: @erdheim_chester   Hashtag suggestions: #ECDAwareness #ErdheimChester #ErdheimChesterDisease
  •   Chat Sessions
    Members join the chat session that suits their role to discuss various topics.  These online sessions are a great way to get to know your fellow ECD families, ask questions, share your story, and find companionship.
  •   LinkedIn
    This account is a source for medical professionals, rare disease advocates, and other stakeholders to stay connected on medical news related to ECD. To follow the ECDGA page, you must be a member of LinkedIn.
  •   ECDGA Public Facebook Page
    This is a public page, accessible by anyone. The ECDGA makes posts and anyone can respond or react to those posts.  The ECDGA publishes topics about things happening with the organization or organization initiatives.
  •   ECDGA Private Facebook Group
    To prevent solicitors, this is a closed group for patients, family, and close friends. Individuals must be approved by the administration to become a member of this group who will verify that they know a registered member of the ECDGA. Once a member, you can invite others to join as members of the group.  The purpose of this group is to allow sharing among those affected by ECD.
  •   Facebook Page (Spanish)
    This is a closed group, much like the private Facebook group described above, but specifically for Spanish speaking members.
  •   Facebook Page (French)
    This is a public group, but a Facebook user must still join before posting. However, the public can see posts without joining.  This group is not regulated or monitored directly by the ECDGA.
  •   Rare Connect
    Members must join RareConnect and then join a specific community, segmented by disease.  The advantage of this social media community is that posts can be translated by humans between English, French, Italian, Spanish, German, Portuguese, Russian, and Serbo-Croatian.  This website focuses only on those with rare diseases.
  •   Twitter
    This media outlet allows users to post brief updates, pictures, and videos.  Tagging certain topics with a hashtag ‘#’ and other Twitter users with the ‘@’ sign leads to more exposure for your “tweet.”
    ECDGA handle: @ECDGA    Hashtag suggestions: #ECDAwareness #ErdheimChester #ErdheimChesterDisease
  •   YouTube
    Find videos created by the ECDGA and others on this channel.  Be sure to share, comment on, or like your favorites!

Last updated: July 3, 2024

Contact Us

  • ECD Global Alliance, P.O. Box 775,
    DeRidder, LA 70634 USA

Featured Partners

Copyright 2024. All rights Reserved ECD GLOBAL ALLIANCE. A 501(c)(3) organization. EIN# 27-0759192. | Privacy Policy