Patients living with: Cardio-Facio-Cutaneous syndrome (KRAS mutation)

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 12 Ages: 6 to 28

Male
33% Male
Female
67% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

50% 1 - 3 times per month
17% 1 or more times per week

Major episodes of care

been admitted to hospital
39% been admitted to hospital
had surgery
35% had surgery
been to the ER
26% been to the ER

A combination of treatments

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Over-the-counter supplements, vitamins, herbs, remedies 27% Prescription medication 27% Special diet/nutrition 27%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Growth delay
  • Developmental delays
  • Gastrointestinal problems

Average age at diagnosis

Average Age at Diagnosis
6 Year(s) old
<1 17
Youngest AGE RANGE Oldest

Extensive testing

  • Genetic TestingGenetic Testing
  • Blood testsBlood tests
  • EEG (electroencephalogram, examines brain waves)EEG (electroencephalogram, examines brain waves)
  • Physical examinationPhysical examination
  • CT scanCT scan

Different types of tests

Different Types of Tests
8

Diagnosing specialty

  • Genetics

Patients everywhere are eager to help find better treatments

Better Treatments

100% want to be contacted about trials

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