Patients living with: MPS IIIB Sanfilippo B Syndrome

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 104 Ages: 1 to 54

46% Male
52% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

40% 2 - 6 times a year
16% 7 - 11 times a year

Major episodes of care

been admitted to hospital
40% been admitted to hospital
been to the ER
37% been to the ER
had surgery
23% had surgery

A combination of treatments

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Prescription medication 31% None 19% Over-the-counter supplements, vitamins, herbs, remedies 17%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Developmental delays
  • Behavior problems
  • Change in activity levels

Average age at diagnosis

Average Age at Diagnosis
5 Year(s) old
1 31
Youngest AGE RANGE Oldest

Extensive testing

  • Blood testsBlood tests
  • Genetic TestingGenetic Testing
  • Urine testsUrine tests
  • BiopsyBiopsy
  • Physical examinationPhysical examination

Different types of tests

Different Types of Tests

Diagnosing specialty

  • Genetics
  • Neurology
  • Metabolism

Patients everywhere are eager to help find better treatments

Better Treatments

93% want to be contacted about trials

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