The EHE Foundation

Cycle 1
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Epithelioid Hemangioendothelioma (EHE) is a rare cancer that belongs to the group of cancers called sarcomas. EHE is a vascular sarcoma. This cancer can occur anywhere in the body with the most common sites being the liver, lungs, and bone. Symptoms depend on where the cancer develops in the body.

Last updated May 2024

Clinical
Disease Class
Rare neoplastic diseases
Body Systems
Cardiovascular / Circulatory
Digestive
Endocrine
Hematopoietic / Lymphatic / Immune
Integumentary / Exocrine
Muscular / Skeletal
Renal / Urinary / Excretory
Reproductive
Respiratory
Organs
Blood
Brain
Connective tissue / joints
Ears
Heart
Intestines
Kidneys
Liver
Lungs
Lymph fluid, nodes, ducts, vessels
Muscles
Nose
Pancreas
Skin
Throat
Genes
CAMTA1
TFE3
WWTR1
YAP1
Type of Inheritance
De novo
Disease Mechanism(s)
Pathogenic mutation
Age of Onset
Adolescence (12-17)
Adulthood (age 18-64)
Early childhood (age 1+-5)
Elderly (age 65+)
Middle childhood (6-11)
Incidence
101-1000
Prevalence
101-1000
Symptoms / Phenotypes
abdominal swelling
ascites
balance problems
bone break / fracture
breathing difficulties
cancer / carcinoma / tumor / malignancy, unspecified
fever
pain, abdominal
pleural effusion
skin redness and/or swelling
vomiting / nausea
weight loss
Biomarkers
None
Existing Therapies
Drugs used off-label
· chemotherapy, immunosuppressants, mTOR inhibitors
Organizational & Research
Cell Lines
None
Cell Lines, location
None
Cell Lines, share
N/A
Disease Model
Mouse
Disease Model, location
Cleveland Clinic
Istituto Nazionale Tumori (INT)
Disease Model, share
Unknown
Clinical Trial Role
Recruitment and outreach, patients
Recruitment and outreach, trial sites/physicians
Biobank
Cleveland Clinic BioRepository (CC-BioR)
Center of Excellence
Memorial Sloan Kettering Cancer Center
Registry
Yes, we have a registry that we created
Data Collected, Registry
Longitudinal natural history data
Medication usage
Patient contact info
Patient-reported data
Data Entered by, Registry
Patients
Platform, Registry
IAMRARE
Natural History Study
Yes, we have collaborated on a natural history study
Data Collected, Natural History Study
Imaging data
Medication usage
Prospective data
Retrospective data
Platform, Natural History Study
REDCap
FDA Patient Listening Session
No
FDA Patient-Focused Drug Development (PFDD) Program
No
ICD Codes
No, we do not have any ICD codes
Diagnostic Guidelines
No
Clinical/Treatment Guidelines
No
Organizational Roles
Executive Director
Patient Engagement Manager/Director
Research/Scientific Director
Science Advisory Board Policies
Yes, willing to share SAB policies
Research Network Policies
Does not have a CRN
Research Roadmap
We don't have a Research Roadmap
International Chapters
None
International Partners
Europe
North America
Oceania