Patients living with:
Alagille Syndrome
Data highlights from the Invitae Patient Insights Network
Who are we?
Patients: 401 Ages: 1 to >60
Impact on our lives
Frequent doctor visits
33%
2 - 6 times a year
29%
7 - 11 times a year
Major episodes of care
44%
been admitted to hospital
A combination of treatments
Prescription medication 31%
Over-the-counter supplements, vitamins, herbs, remedies 29%
Special diet/nutrition 20%
Getting diagnosed
Initial symptoms
- Other
- Abnormal laboratory findings
- Growth delay
Average age at diagnosis
<1
>60
Youngest
AGE RANGE
Oldest
Diagnosing specialty
- Gastroenterology
- Genetics
- Unsure
Patients everywhere are eager to help find better treatments
90% want to be contacted about trials
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