Home / Rare Diseases / Epithelioid Hemangioendothelioma
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Epithelioid Hemangioendothelioma

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Last updated: 04/26/2023
Years published: 2023

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Disease Overview

Epithelioid hemangioendothelioma (EHE) is an ultra-rare vascular sarcoma that has a prevalence of less than one in a million people and affects all age groups, with incidence peaking in the fourth and fifth decade of life and is very rare in children. EHE can arise anywhere in the body and most commonly occurs in the liver, lung and bones with more than 50% of patients presenting with metastatic disease.

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Synonyms

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References

Epithelioid Hemangioendothelioma (EHE). National Cancer Institute/MyPART. February 27, 2019. https://www.cancer.gov/pediatric-adult-rare-tumor/rare-tumors/rare-vascular-tumors/epithelioid-hemangioendothelioma Accessed April 26, 2023.

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Programs & Resources

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RareCare® Assistance Programs

NORD strives to open new assistance programs as funding allows. If we don’t have a program for you now, please continue to check back with us.

Additional Assistance Programs

MedicAlert Assistance Program

NORD and MedicAlert Foundation have teamed up on a new program to provide protection to rare disease patients in emergency situations.

Learn more https://rarediseases.org/patient-assistance-programs/medicalert-assistance-program/

Rare Disease Educational Support Program

Ensuring that patients and caregivers are armed with the tools they need to live their best lives while managing their rare condition is a vital part of NORD’s mission.

Learn more https://rarediseases.org/patient-assistance-programs/rare-disease-educational-support/

Rare Caregiver Respite Program

This first-of-its-kind assistance program is designed for caregivers of a child or adult diagnosed with a rare disorder.

Learn more https://rarediseases.org/patient-assistance-programs/caregiver-respite/
Learn more about Patient Assistance Programs >

Patient Organizations

The EHE Foundation
NORD Member
Related Rare Diseases: Epithelioid Hemangioendothelioma
https://rarediseases.org/organizations/ehe-foundation/
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More Information

The information provided on this page is for informational purposes only. The National Organization for Rare Disorders (NORD) does not endorse the information presented. The content has been gathered in partnership with the MONDO Disease Ontology. Please consult with a healthcare professional for medical advice and treatment.

GARD Disease Summary

The Genetic and Rare Diseases Information Center (GARD) has information and resources for patients, caregivers, and families that may be helpful before and after diagnosis of this condition. GARD is a program of the National Center for Advancing Translational Sciences (NCATS), part of the National Institutes of Health (NIH).

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Orphanet

Orphanet has a summary about this condition that may include information on the diagnosis, care, and treatment as well as other resources. Some of the information and resources are available in languages other than English. The summary may include medical terms, so we encourage you to share and discuss this information with your doctor. Orphanet is the French National Institute for Health and Medical Research and the Health Programme of the European Union.

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