Patients living with:
Cardio-Facio-Cutaneous syndrome (Other mutation)
Data highlights from the Invitae Patient Insights Network
Who are we?
Patients: 14 Ages: 6 to 25
Impact on our lives
Frequent doctor visits
40%
1 - 3 times per month
20%
7 - 11 times a year
Major episodes of care
42%
been admitted to hospital
A combination of treatments
Over-the-counter supplements, vitamins, herbs, remedies 36%
Prescription medication 27%
Special diet/nutrition 18%
Getting diagnosed
Initial symptoms
- Developmental delays
- Other
- Growth delay
Average age at diagnosis
1
17
Youngest
AGE RANGE
Oldest
Patients everywhere are eager to help find better treatments
93% want to be contacted about trials
Brought to you by:
Genetic Testing
Blood tests
Physical examination
CT scan
Echocardiogram
