Primary care
Recommendation 1
Support for ADLs due to increased skin fragility
This information is AI generated and has not yet been reviewed by a specialist physician. AI can make mistakes.
Recommendation 1
Clinical exam and genetic testing (WES)Recommendation 1
Clinical exam and genetic testing (WES)ZebraMD is partnering with Ambry Genetics for clinical-grade whole genome testing for rare diseases. Ambry accepts insurance. If you don’t have a physician to order this test, join our referral list and our team will reach out.
Recommendation 1
Supportive Treatment OnlyRecommendation 1
Support for ADLs due to increased skin fragilityRecommendation 1
No specific physicians specialize in this condition, often managed by dermatology. Referral to Medical Genetics Department, if available. Initial virtual care is also available through organizations like TeleRare Health.Follow to receive regular updates to the latest research development on this disease via email newsletter.