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.

To connect with others caring for loved ones with ECD, join our virtual chats for caregivers.  Register for the next meeting here.

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 free copy by filling out this form.

Request a Brochure

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

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Last updated: June 11, 2024

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

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