Patients living with:
Cardio-Facio-Cutaneous syndrome (BRAF mutation)
Data highlights from the Invitae Patient Insights Network
Who are we?
Patients: 305 Ages: <1 to 54
Impact on our lives
Frequent doctor visits
31%
1 - 3 times per month
26%
2 - 6 times a year
Major episodes of care
38%
been admitted to hospital
A combination of treatments
Prescription medication 33%
Special diet/nutrition 24%
Over-the-counter supplements, vitamins, herbs, remedies 20%
Getting diagnosed
Initial symptoms
- Developmental delays
- Growth delay
- Gastrointestinal problems
Average age at diagnosis
<1
46
Youngest
AGE RANGE
Oldest
Diagnosing specialty
- Genetics
- Neurology
- Other type of doctor or healthcare provider
Patients everywhere are eager to help find better treatments
88% want to be contacted about trials
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