Epidermolysis Bullosa Clinic

Epidermolysis bullosa (EB) is an inherited group of disorders in which a protein in the skin is missing causing the skin to blister easily with friction or trauma. With severe forms, many other organ systems are involved.

The EB Clinic is held twice a month. Once per month, a multidisciplinary team, including a pediatric nutritionist, pediatric gastroenterologist, pediatric ophthalmologist, and pediatric dermatologist, sees pediatric patients and young adults. A wide range of other specialists at UMass Memorial have expertise in EB and see patients as needed, including pediatric surgery, pediatric and adult palliative care, and pediatric hematology/oncology.

The most recent advances for the treatment of this condition include gene therapy and a variety of topical preparations, which are in clinical trials

Frequently Asked Questions

Do you see adults in this clinic? 

Yes, adults are seen in the EB Clinic on a case-by-case basis. We are primarily pediatric providers.

Is the EB Clinic involved in therapy trials?

We’re not involved in therapy trials at the moment but we can direct patients to ongoing trials. We are involved in the EBCRC trial to collect data on all EB patients.