Patients living with: VLCAD

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 16 Ages: 2 to >60

44% Male
56% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

100% 2 - 6 times a year

Major episodes of care

been to the ER
56% been to the ER
been admitted to hospital
38% been admitted to hospital
had surgery
6% had surgery

A combination of treatments

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Prescription medication 40% Special diet/nutrition 40% Medical foods 20%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Other
  • Abnormal laboratory findings

Average age at diagnosis

Average Age at Diagnosis
4 Year(s) old
<1 57
Youngest AGE RANGE Oldest

Extensive testing

  • Blood testsBlood tests
  • Genetic TestingGenetic Testing
  • Newborn screening Newborn screening
  • OtherOther
  • Urine testsUrine tests

Different types of tests

Different Types of Tests

Diagnosing specialty

  • Genetics
  • Metabolism
  • Did not see a doctor or healthcare provider for this condition

Patients everywhere are eager to help find better treatments

Better Treatments

100% want to be contacted about trials

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