Staying Connected

Patient BlogsATT G - Blog Icon

Josef’s ECD Diary
Without a Manual
A Rare Diseased Life     
Good Intentions
ECD Project
Minkey’s Place


Note: In order to enter the following Facebook sites, you must first log on to your Facebook account.  If you don’t have one, please go to and set one up.

Erdheim Chester Disease Alliance

This is a “closed group” setting which was created by the ECD Global Alliance and is provided here for those interested.  It is maintained by the ECD Global Alliance and can be used as a tool for connecting with others that are affected by ECD, both patients and family members.  If you are not a registered member or a listed family member of the ECDGA you may be asked to explain your interest in joining the page to help secure the privacy of patients and prevent spam violations.  Thank you for understanding this important condition of joining the page.

Enfermedad de Erdheim Chester

This Facebook page was created by a volunteer of the ECD Global Alliance to help reach out to the Spanish speaking community.  This has the same features as the English speaking page and can also be found on the Spanish ECDGA web link.

Defying a Frightening Diagnosis.

This site was created by a member of the ECD Global Alliance and is meant to be a place of comfort for those who receive a frightening diagnosis.

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Last updated: November 5, 2016

Contact Us

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

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