Patients living with:
Cardio-Facio-Cutaneous syndrome
Data highlights from the Invitae Patient Insights Network
Who are we?
Patients: 114 Ages: <1 to >60
Impact on our lives
Frequent doctor visits
33%
2 - 6 times a year
30%
1 - 3 times per month
Major episodes of care
39%
been admitted to hospital
A combination of treatments
Prescription medication 43%
Special diet/nutrition 20%
Over-the-counter supplements, vitamins, herbs, remedies 18%
Getting diagnosed
Initial symptoms
- Developmental delays
- Growth delay
- Gastrointestinal problems
Average age at diagnosis
<1
>60
Youngest
AGE RANGE
Oldest
Diagnosing specialty
- Genetics
- Cardiology
- Developmental/Behavioral Specialist
Patients everywhere are eager to help find better treatments
92% want to be contacted about trials
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