Epidermolysis Bullosa
What to Expect

What to Expect at Your First Appointment at the Epidermolysis Bullosa Center

If you are visiting the Cincinnati Children’s Epidermolysis Bullosa Center, you’ve likely already been in contact with your pediatrician. Your child has probably undergone a skin biopsy or genetic testing confirming that they have Epidermolysis Bullosa, a rare group of genetic conditions that results in fragile skin.

Our job is to guide you through the next steps—learning about your child’s condition, understanding complications that may arise and preparing yourself for any potential hospital stays or surgeries in the future. We are here to help you navigate the world of Epidermolysis Bullosa (EB).

Making an Appointment at the Epidermolysis Bullosa Center

We want it to be easy for you to get the care your child needs. You can contact us directly to schedule an appointment or your child’s pediatrician or provider can refer your child to our center. We also take referrals from the emergency department and other hospitals.

When you contact us, a staff member will email or mail you a packet of information. It will include forms you must fill out so we can be familiar with your child and their complete medical history before the clinic visit. You can send the forms to us by mail or email. After receiving this completed packet your child will be added to our waitlist for an appointment with the EB Center.

On the Day of Your Visit to the Epidermolysis Bullosa Center

Arriving At Your Appointment

You will need to arrive about 30 minutes before your child’s appointment. This will allow 15 minutes to park and walk to our clinic, and 15 minutes to check in at our registration desk. We see patients at the Multipractice Center on the Burnet Campus of Cincinnati Children’s, Location C, Level 2.

If you are running late, please contact us.

At Your Appointment

At this first appointment, we want to establish a relationship with you and your child so that you’ll feel comfortable coming to us with any questions or concerns. Your child will be seen by up to ten providers specializing in EB. This appointment can be expected to take up to five hours. There is no cure for Epidermolysis Bullosa, but our center is in close contact with research groups around the world. We can connect you with the support and treatment you need.

After Your Visit to the Epidermolysis Bullosa Center

You and your local providers will receive an individualized care plan after your appointment. It will include all clinical notes and recommendations from the providers your child saw during their visit as well as test results, referrals to specialists, and all medications (including new prescriptions).