Patients living with: Bilateral Frontoparietal Polymicrogyria

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 10 Ages: 2 to 12

Male
40% Male
Female
60% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

Major episodes of care

been admitted to hospital
50% been admitted to hospital
been to the ER
43% been to the ER
had surgery
7% had surgery

A combination of treatments

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Getting diagnosed

Getting diagnosed

Initial symptoms

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

Average age at diagnosis

Average Age at Diagnosis
1 Year(s) old
<1 4
Youngest AGE RANGE Oldest

Extensive testing

  • BiopsyBiopsy
  • Blood testsBlood tests
  • CT scanCT scan
  • Genetic TestingGenetic Testing
  • MRIMRI

Different types of tests

Different Types of Tests
6

Diagnosing specialty

  • Neurology
  • Neonatology

Patients everywhere are eager to help find better treatments

Better Treatments

90% want to be contacted about trials

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