Management requires a multi-disciplinary approach. Specific regular follow-up is recommended based on the patient's clinical manifestations. Musculoskeletal anomalies may require a precocious orthopedic intervention. Rehabilitation therapy should be tailored to the patient's characteristics.
Opthalmological follow up may be appropriate. Audiological evaluation may also be proposed since hearing loss has been reported in a few cases. Echocardiogram and abdominal ultrasound should also be proposed as cardiac and renal abnormalities have been reported, although rarely.