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: 24 Ages: 4 to 55

Male
33% Male
Female
50% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

67% 2 - 6 times a year
22% 1 - 3 times per month

Major episodes of care

been admitted to hospital
47% been admitted to hospital
been to the ER
26% been to the ER
had surgery
26% had surgery

A combination of treatments

image description
Prescription medication 50% None 25% Medical therapy 8%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Other
  • Gastrointestinal problems
  • Pain

Average age at diagnosis

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

Extensive testing

  • Genetic TestingGenetic Testing
  • EchocardiogramEchocardiogram
  • Blood testsBlood tests
  • Physical examinationPhysical examination
  • EKG (electrocardiogram, examines heart rhythm)EKG (electrocardiogram, examines heart rhythm)

Different types of tests

Different Types of Tests
12

Diagnosing specialty

  • Genetics
  • Cardiology
  • Dermatology

Patients everywhere are eager to help find better treatments

Better Treatments

88% want to be contacted about trials

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