If your child has epidermolysis bullosa (EB), we’re here to help. University of Minnesota Masonic Children’s Hospital and clinics offer a team of specialists and staff who have more than 10 years of experience coordinating care and managing the unique needs of EB patients. One of the many benefits of our care is convenience; we routinely arrange multiple appointments on the same day using a system designed to keep your child’s appointments running smoothly. All of our health care providers are connected by a shared electronic medical record and scheduling system, so we can function as seamlessly as possible.

We know that managing the complex care needs for your child can be overwhelming. We can relieve some of this burden by taking the lead on managing coordinated, complete care for your child:

• Our nurse coordinator will help you identify and schedule specialist appointments.
• Our nurse coordinator will help answer questions, collect records from outside institutions, and verify insurance benefits.
• Because our program offers a breadth of specialists, patients’ needs can be met within our health system with a coordinated plan of care.
• We will keep your primary care doctor informed of your child’s progress through regular updates. For patients visiting from out of town, we will work closely with your local care teams to manage ongoing care when you return home.
• Resources like our Child-Family Life Services team and exceptional hospital amenities can help make your child’s visit engaging for everyone in the family, including siblings.

While the majority of EB treatments focus on topical therapies, we were the first to explore using bone marrow transplant to provide a whole-body therapy that could address symptoms inside and out. Since 2007, we have treated more than 60 patients. Our physicians work closely with our broader care team and researchers worldwide to continually improve and advance care and treatment options.