Patients living with: Alagille Syndrome

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 197 Ages: 1 to >60

50% Male
50% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

36% 2 - 6 times a year
27% 7 - 11 times a year

Major episodes of care

been admitted to hospital
44% been admitted to hospital
had surgery
29% had surgery
been to the ER
27% been to the ER

A combination of treatments

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Over-the-counter supplements, vitamins, herbs, remedies 29% Prescription medication 29% Special diet/nutrition 21%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Other
  • Abnormal laboratory findings
  • Growth delay

Average age at diagnosis

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

Extensive testing

  • Blood testsBlood tests
  • Genetic TestingGenetic Testing
  • X-ray(s)X-ray(s)
  • BiopsyBiopsy
  • EchocardiogramEchocardiogram

Different types of tests

Different Types of Tests

Diagnosing specialty

  • Gastroenterology
  • Genetics
  • Unsure

Patients everywhere are eager to help find better treatments

Better Treatments

90% want to be contacted about trials

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