Preparing for Your EB Clinic Appointment

If your child has been diagnosed with epidermolysis bullosa, or EB is suspected, you or your physician can contact the Epidermolysis Bullosa Multidisciplinary Clinic at 215-590-2169 to schedule a consultation.

Before scheduling your clinic visit, you will be asked to complete an intake form. This will be emailed or mailed to you in advance of your appointment. This form will provide our team with the detailed medical information we need to get to know your child and help us understand their individual symptoms and disease presentation.

Once we receive the completed form, we will review your child’s records and contact you to set up your appointment and discuss next steps.

Referrals

If your insurance company requires a referral before your child can be examined at CHOP, please contact your child's primary care provider. The provider will need to know the date of your child's upcoming visit, provider numbers (which our appointment schedulers can provide you), and which CHOP location your child is being seen at. Referrals need to be in place at the time of your child's appointment at CHOP or the visit may be delayed or rescheduled.

The EB Clinic is located within Dermatology on the 6th floor of the Buerger Center for Advanced Pediatric Care, located at 3500 Civic Center Blvd., Philadelphia, PA, on the Raymond G. Perelman Campus.

Parking and check-in

Proceed down Civic Center Boulevard and turn left at Osler Circle onto the Buerger Center plaza. Immediately turn right into the underground parking garage. The cost for parking is $4.

When you arrive for your EB Clinic visit, you will check in at the welcome desk in the Buerger Center lobby where you’ll receive a visitor badge. We encourage you to arrive at least 15 minutes prior to your scheduled appointment time to allow enough  time to park and get all checked in.

You’ll then be directed to the 6th floor where you will check in with the medical team at a self-check-in kiosk or one of our patient service representatives.

Clinic schedule

Once you are escorted to an exam room, you will not need to move around — all of the specialists planned as part of your EB Clinic appointment will come to you.

Please plan to spend the entire afternoon at CHOP seeing many specialists specific to your child’s needs. The Buerger Center features “Wait, Play, Learn” areas for educational play, an outdoor plaza, a rooftop garden, and a Welcome Center on the ground level with a lounge, TV, computers and more where you can relax before your appointments. If you’re hungry, there is a café with grab-and-go snack options on the ground level.

• Appointment information: Doctor’s name, building name/location, time of appointment.
• Insurance information and current insurance cards: Please provide any authorization your insurance company may require. You should call your insurance company to get this information.
• Co-pay or co-insurance for the visit: If you have any questions, please call the pre-visit financial counseling hotline at 1-800-664-7855.
• Phone and fax numbers of your child’s primary care physician, pharmacy, and the provider who referred you to CHOP.
• Medications: Bring all of the medications your child currently takes — including over-the-counter medications — in a bag. If you’d prefer to write a list of medications, we will need the medicine name, dosage, frequency, prescribing doctor, pharmacy name and phone number, as well as how long your child has been using this medication. Most families find it easier to toss everything in a bag and bring it along.
• Notes of any questions or comments so you don’t forget all the things you wanted to ask, or tell your child’s provider.
• Other items: We encourage you to bring toys, books and/or snacks to keep your child or children occupied and content while waiting.
• Any wound care items and medications needed for a dressing change. Please plan to do a full dressing change if possible at the visit. This way we can assess all of your child’s wounds, recommend dressing types or plans, look for signs of infection, and monitor for skin cancer when appropriate.

If your family feels more comfortable speaking a language other than English, the Hospital offers language services at no cost. Let us know if you’d like to arrange for an interpreter to join you for your appointment.