Epidermolysis Bullosa Clinic Information and Patient Resources
Information about Epidermolysis bullosa (EB)
- EB FAQs
- EB Wound Care: Read tips about wound care for an EB child in Basic Care Tips for Epidermolysis Bullosa (EB) - A Parent's Guide by Lorraine Spaulding (PDF)
- EB wound care videos: Videos prepared by Stanford, featuring Lorraine Spaulding
- Stanford EB Research Website
- Guidelines from DebRA International: Includes best practice guidelines for skin and wound care, pain management, cancer management, psychosocial care, occupational therapy, and more
Information on EB Diagnosis:
- EB Diagnostic Services: Stanford Dermatopathology Service evaluates biopsies for the diagnosis of epidermolysiss bullosa with electron microscopy and with immunomapping of the basement membrane zone. This service is provided in close collaboration with Dr. Joyce Teng (Director of Pediatric Dermatology) and with Dr. Peter Marinkovich (Director of the Blistering Disease Clinic).
- Genetic testing for EB: GeneDx specializes in genetic testing for rare hereditary disorders, including EB
Camps for Children with Severe Skin Conditions
- Camp Wonder
This free summer camp for children with serious skin conditions is organized each year by the Children's Skin Disease Foundation. - Camp Discovery
Each year, the American Academy of Dermatology sponsors a week-long camp at no cost for children ages 10 to 16 with serious skin conditions. - Camp Spirit (Winter Camp)
Each year the EB clinic sponsors a Winter Adventure Camp (Camp Spirit) for children with recessive dystrophic EB.
Wound Care Information and Supplies
- Tendra Molnlycke Wound Care Products (ex. Mepitel, Mepilex, etc)
- Kendall Wound Care Products
- EB Nurse
- National Rehabilitation Organization