A Personal Perspective - Understanding The Mucopolysaccharidoses (MPS) Patient'S Needs

40 minutes
English
Rare Diseases
Mucopolysaccharidosis
MPS

Misdiagnosis of Mucopolysaccharidosis (MPS) results in late diagnosis and the late start of treatment, which has significant consequences on long-term outcomes. This gap usually results in confusing symptoms with other conditions, most notably trying to address symptoms directly and delaying actual diagnosis and treatment or referring the patient to the wrong pediatric specialties, causing further delays in the condition’s management chain.

Learning Objectives

Understanding a child’s MPS diagnosis journey from the family's perspective.Gaining insights into everyday life, family, siblings, daycare, kindergarten, and school.What do all pediatricians need to pay attention to? - useful tips and advice from parents to HCPs.What do parents want pediatricians to ask them, but they never have?