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Resources

Contact Us-edit

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

Medication Assistance

Finding a solution to your prescription needs can be challenging.  The following list includes drug programs that could possibly help obtain drugs affordably.  Please also find payer assistance on our webpage Filing Payer Appeals.

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Insurance and Financial Assistance

Financial and healthcare support may be available through the following sources.

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Travel Assistance

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Partner Associations

The following advocacy groups serve either histiocytosis disorders or rare diseases in general and may be of assistance in your journey with ECD. 

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General Resources

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Depression & Anxiety Help

If you feel you may hurt yourself or someone else, call, text, or chat to 988, to reach a crisis counselor at the National Suicide and Crisis Prevention Hotline. 24/7 help. 988 Lifeline

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APV-D Resources

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