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 at Histiocytic Neoplasms – Guidelines Detail (nccn.org) where you will need to click on ‘NCCN guidelines’. The site requires creation of a free account to access the document, but it is worth the trouble.

In addition, Survivorship Issues in Adult Patients with Histiocytic Neoplasms provides guidance on managing some of the complications and challenges that someone living with ECD may encounter.

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: October 24, 2024

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