English Edition

Mattia Doria 1, Giuseppina Annicchiarico 1, Carmelo Rachele 1, Carlo Minetti 2, Adele D’Amico 2, Marika Pane 2, Filippo Buccella 3, Marco Rasconi 4

1 Italian Federation of Medical Pediatricians; 2 Italian Myology Association; 3 Parent Project Association; 4 Italian Union Against Muscular Dystrophy

Recommendations regarding the early recognition of neuromuscular disorders (with a focus on Duchenne muscular dystrophy)

 

Introduction…………………………………………………………………………………………………………….. 11

Neuromuscular disorders…………………………………………………………………………………………….. 12

Strategies to facilitate early recognition…………………………………………………………………………….. 12

First-level diagnostic work-up…………………………………………………………………………………………. 13

The primary care pediatrician: role and place in the chain of public healthcare

for children with rare diseases……………………………………………………………………………………….. 14

Who are the experts in rare diseases and how can they be reached? ……………………………………….. 14

How to obtain information?………………………………………………………………………………………….. 15

From suspicion to diagnosis………………………………………………………………………………………….. 16

Guiding the family during the diagnostic process: the responsibility of the primary care pediatrician……… 16

Conclusions…………………………………………………………………………………………………………….. 16

References……………………………………………………………………………………………………………… 17

Websites……………………………………………………………………………………………………………….. 18

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