Patients living with:
Noonan syndrome with multiple lentigines (AKA: LEOPARD syndrome)
Data highlights from the Invitae Patient Insights Network
Who are we?
Patients: 23 Ages: 4 to 54
Impact on our lives
Frequent doctor visits
63%
2 - 6 times a year
25%
1 - 3 times per month
Major episodes of care
47%
been admitted to hospital
A combination of treatments
Prescription medication 55%
None 18%
Medical therapy 9%
Getting diagnosed
Initial symptoms
- Other
- Gastrointestinal problems
- Pain
Average age at diagnosis
<1
29
Youngest
AGE RANGE
Oldest
Diagnosing specialty
- Genetics
- Cardiology
- Dermatology
Patients everywhere are eager to help find better treatments
87% want to be contacted about trials
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