Patients living with: Canavan disease

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 144 Ages: <1 to >60

48% Male
50% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

36% 2 - 6 times a year
32% 1 - 3 times per month

Major episodes of care

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

A combination of treatments

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Prescription medication 28% Special diet/nutrition 26% Over-the-counter supplements, vitamins, herbs, remedies 23%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Developmental delays
  • Changes in senses
  • Behavior problems

Average age at diagnosis

Average Age at Diagnosis
1 Year(s) old
<1 12
Youngest AGE RANGE Oldest

Extensive testing

  • Urine testsUrine tests
  • Genetic TestingGenetic Testing
  • Blood testsBlood tests
  • EEG (electroencephalogram, examines brain waves)EEG (electroencephalogram, examines brain waves)

Different types of tests

Different Types of Tests

Diagnosing specialty

  • Neurology
  • Genetics
  • Pediatrics

Patients everywhere are eager to help find better treatments

Better Treatments

86% want to be contacted about trials

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