Patients living with: Epithelioid Hemangioendothelioma

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 470 Ages: 8 to >60

Male
35% Male
Female
63% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

43% 2 - 6 times a year
15% One time a year

Major episodes of care

been admitted to hospital
41% been admitted to hospital
had surgery
38% had surgery
been to the ER
21% been to the ER

A combination of treatments

image description
None 29% Prescription medication 22% Medical therapy 19%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Pain
  • Fatigue
  • Other

Average age at diagnosis

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

Extensive testing

  • BiopsyBiopsy
  • CT scanCT scan
  • MRIMRI
  • UltrasoundUltrasound
  • Blood testsBlood tests

Different types of tests

Different Types of Tests
17

Diagnosing specialty

  • Oncology
  • Orthopedics
  • Unsure

Patients everywhere are eager to help find better treatments

Better Treatments

88% want to be contacted about trials

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