Specialized Epidermolysis Bullosa Care and Support
National Expertise in Rare EB Conditions
Our specialists care for those with all major forms of epidermolysis bullosa, including rare and complex cases that need support from many experts.
Families travel from around the world to Cincinnati Children’s for coordinated care, advanced treatment options and long-term support. Contact us.
Access to Advanced Therapies
Our team offers advanced therapies for epidermolysis bullosa, including Vyjuvek, Filsuvez, Dupixent, Zevaskyn and other emerging treatments.
As a research-focused program, we continue working to improve treatment options and future care for children with EB. Our team is also building a biobank to support future epidermolysis bullosa research.
Coordinated Care Across Specialties
Patients with EB often need care from experts across many different areas of the hospital. Our team-based care approach brings together specialists in dermatology, nutrition, pain management, gastroenterology, dentistry, orthopaedics, ophthalmology, psychology and more.
We work closely together to create one clear care plan for each patient. Families benefit from coordinated visits, fewer separate appointments and consistent communication between providers.
Dedicated Support for Families
Our dedicated nurse coordinators and clinic team support families from the first referral through lifelong care. Before the first visit, families complete a telephone intake to help identify medical needs and schedule the right specialists.
For those with more complex forms of EB, families also work with a primary nurse and advanced practice provider for long-term continuity and support.
Care for Families Traveling to Cincinnati
Families travel from across the country to receive care from our EB specialists. Our streamlined scheduling process helps families complete as many appointments and procedures as possible during a short stay in Cincinnati.
We also partner with local pediatricians, dermatologists and specialists to help children continue care closer to home when appropriate.
Questions Families Often Ask
What is epidermolysis bullosa (EB)?
EB is a group of rare genetic skin conditions that cause fragile skin and painful blisters. Some forms of EB can also affect the mouth, digestive system, eyes and other parts of the body.
Will my child need lifelong care?
Many people with EB benefit from long-term care and regular follow-up visits. Our team supports families through childhood, adolescence and transition into adult care.
Can Cincinnati Children’s help with a second opinion?
Yes. Families from all over the world come to Cincinnati Children’s for expert evaluation, treatment recommendations and second opinions for complex or rare forms of EB.
