Epidermolysis Bullosa Clinic Visits

Our outpatient Epidermolysis Bullosa Clinic occurs once a month, usually on the third Friday of the month. The clinic is staffed by highly skilled pediatric specialists, experienced in the care of children with epidermolysis bullosa.

If you are a physician and would like to refer a patient to our EB Clinic, download a Consultation Request.  (PDF)

When you contact our EB Clinic, one of our staff members will mail you a packet of information and forms to fill out before your scheduled appointment. Alternatively, you may download the EB Patient Information Form below. These forms will provide us with important information, which will enable us to better care for your child. Please complete these forms prior to your visit with us. You may fax the completed form to (650) 498-4209.

EB Patient Information Form (PDF)

To help us provide quality care for your child, please bring the following to your scheduled visit:

  • List of current medications
  • Your child's regular primary care provider's contact information
  • Bandaging materials for one dressing change (our nurse will assist with dressing care during the visit)
  • If this is your child's first visit with us, please bring his/her medical records for our review (such as laboratory results, biopsy results, genetics testing, growth chart)
  • The completed packet of information and forms

At your first clinic visit, we will be spending a lot of time getting to know your child. This visit may take 2 hours. At subsequent follow-up visits, less time may be needed depending on how severe your child's condition is. A complete visit consists of the following:

  • Discussion of your questions and concerns
  • Evaluation by our team of doctors
  • Meeting with our social worker
  • Full skin examination with dressing changes (assisted by our nurse)
  • Photographs
  • Laboratory tests

After this comprehensive visit, we will send a report to your child's regular provider to ensure continuity of care. We look forward to taking care of your child. Please contact us with any questions.

Meet our core team of EB Clinic Providers

Pediatric Dermatologists Phuong Khuu, MD Thomas Leung, MD, PhD
Adult EB Dermatologist M. Peter Marinkovich, MD  
Pediatric Pain Specialist Julie Good, MD  
Pediatric Hand Surgeon Amy Ladd, MD  
Pediatric Gastroenterologist Ricardo O. Castillo, MD  
Pediatric Dentist Contact the EB Clinic for a referral  
Pediatric Nutritionist Gretchen Flanagan  
Pediatric Physical Therapist Debbie Tong, MA, PT  
Pediatric Occupational Therapist Jennifer Chan, OT  
Nurse Specialist Lisa Taylor, RN Karen Griggs, RN
  Maritess Sales Charlotte Hartman
Social Worker Robin Newman, MSW