PRIMARY CARE
Recommendation 1
Specialist referrals and supportive therapy
Recommendation 1
Genomic testing methods that determine the copy number of sequences can include chromosomal microarray analysis (CMA) or targeted duplication analysisRecommendation 1
Genomic testing methods that determine the copy number of sequences can include chromosomal microarray analysis (CMA) or targeted duplication analysisRecommendation 1
Supportive Therapy OnlyRecommendation 1
Specialist referrals and supportive therapyRecommendation 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
One clinical study currently recruitingFollow to receive regular updates to the latest research development on this disease via email newsletter.