Resource Materials

These online resources are listed to provide potentially helpful advice and services offered by healthcare companies, nonprofit organizations, and other advocacy groups.

Most of these services are offered to people living in the US.  If you know of additional resources that should be listed for the US or other countries, please contact the ECD Global Alliance.

The most recent, expert guidelines for ECD care and treatment can be found here: Erdheim-Chester disease: consensus recommendations for evaluation, diagnosis, and treatment in the molecular era.

ECD medical experts in our community have helped compile two types of brochures for general education and awareness purposes.  The patient brochure is available to help new members of the community understand the basics of ECD.  The medical brochure is available to share with your care team or any medical professional. 

Request a Brochure

Last updated: June 11, 2024

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