PRIMARY CARE
Recommendation 1
Specialist referrals, medication, and surgical management
Recommendation 1
Computerized tomography (CT) scanning, magnetic resonance imaging (MRI), bone scans, biopsy of the bone marrowRecommendation 1
Computerized tomography (CT) scanning, magnetic resonance imaging (MRI), bone scans, biopsy of the bone marrowRecommendation 1
ChemotherapyRecommendation 2
vincristine, cyclophosphamide, dactinomycin, ifosfamide, and etoposide.Recommendation 1
Specialist referrals, medication, and surgical managementRecommendation 1
No specific physicians specialize in this condition but NORD recommends various rare disease clinics. Referral to Medical Genetics Department, if available. Initial virtual care is also available through organizations like TeleRare Health.Recommendation 1
Various clinical trials still recruitingFollow to receive regular updates to the latest research development on this disease via email newsletter.