PRIMARY CARE
Recommendation 1
Support for ADLs due to increased skin fragility
Recommendation 1
Clinical exam and genetic testing (WES)Recommendation 1
Clinical exam and genetic testing (WES)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.Recommendation 1
None are available, but can sign up to be notified when one becomes availableFollow to receive regular updates to the latest research development on this disease via email newsletter.