Patients living with: Epithelioid Hemangioendothelioma

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 384 Ages: 1 to >60

34% Male
64% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

43% 2 - 6 times a year
15% 1 - 3 times per month

Major episodes of care

been admitted to hospital
42% been admitted to hospital
had surgery
37% had surgery
been to the ER
21% been to the ER

A combination of treatments

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None 30% Prescription medication 21% Medical therapy 17%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Pain
  • Fatigue
  • Other

Average age at diagnosis

Average Age at Diagnosis
40 Year(s) old
1 >60
Youngest AGE RANGE Oldest

Extensive testing

  • BiopsyBiopsy
  • CT scanCT scan
  • PET scanPET scan
  • Blood testsBlood tests

Different types of tests

Different Types of Tests

Diagnosing specialty

  • Oncology
  • Unsure
  • Orthopedics

Patients everywhere are eager to help find better treatments

Better Treatments

87% want to be contacted about trials

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