Patients living with: Noonan syndrome with multiple lentigines (AKA: LEOPARD syndrome)

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 12 Ages: 1 to 47

50% Male
42% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

60% 2 - 6 times a year
20% 1 - 3 times per month

Major episodes of care

been admitted to hospital
57% been admitted to hospital
been to the ER
29% been to the ER
had surgery
14% had surgery

A combination of treatments

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Prescription medication 50% Medical therapy 13% None 13%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Other
  • Pain
  • Developmental delays

Average age at diagnosis

Average Age at Diagnosis
6 Year(s) old
<1 29
Youngest AGE RANGE Oldest

Extensive testing

  • Genetic TestingGenetic Testing
  • Physical examinationPhysical examination
  • Blood testsBlood tests
  • EchocardiogramEchocardiogram
  • Medical historyMedical history

Different types of tests

Different Types of Tests

Diagnosing specialty

  • Genetics
  • Dermatology
  • Obstetrics/Gynecology

Patients everywhere are eager to help find better treatments

Better Treatments

83% want to be contacted about trials

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