Caregiver Resources

Caregivers in the rare disease community face some exceptional hurdles. You may even have faced the special challenge of having to be the one to educate your medical providers and others about Erdheim-Chester disease. So you need information, education, and tools that can help you manage the many daunting tasks you face as you care for your loved one.  The sources below will direct you to organizations that offer assistance and/or information that may help.

See other resources here.

If you know of other resources that should be listed, please contact us.

If you would like to be put in contact with other ECD caregivers for more support, please let us know.

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Last updated: January 22, 2018

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

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