Patients living with:
Bilateral Frontal Polymicrogyria
Data highlights from the Invitae Patient Insights Network
Who are we?
Patients: 27 Ages: 1 to 37
Impact on our lives
Frequent doctor visits
50%
7 - 11 times a year
25%
1 or more times per week
Major episodes of care
50%
been admitted to hospital
A combination of treatments
Prescription medication 43%
Medical foods 29%
Over-the-counter supplements, vitamins, herbs, remedies 14%
Getting diagnosed
Initial symptoms
- Developmental delays
- Gastrointestinal problems
Average age at diagnosis
<1
4
Youngest
AGE RANGE
Oldest
Extensive testing
MRI
Patients everywhere are eager to help find better treatments
93% want to be contacted about trials
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