Patients living with:
LCHAD
Data highlights from the Invitae Patient Insights Network
Who are we?
Patients: 32 Ages: 3 to 31
Impact on our lives
Frequent doctor visits
50%
2 - 6 times a year
33%
7 - 11 times a year
Major episodes of care
45%
been admitted to hospital
A combination of treatments
Special diet/nutrition 35%
Medical foods 24%
Over-the-counter supplements, vitamins, herbs, remedies 24%
Getting diagnosed
Initial symptoms
- No symptoms
- Abnormal laboratory findings
- Change in activity levels
Average age at diagnosis
<1
12
Youngest
AGE RANGE
Oldest
Diagnosing specialty
- Genetics
- Metabolism
- Neonatology
Patients everywhere are eager to help find better treatments
94% want to be contacted about trials
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