The Epidermolysis Bullosa Multidisciplinary Clinic

About the Epidermolysis Bullosa Multidisciplinary Clinic

The Epidermolysis Bullosa Multidisciplinary Clinic at Children’s Hospital Colorado offers integrated, expert care for children, adolescents and adults living with epidermolysis bullosa (EB), a rare genetic disorder that results in extremely fragile skin. Our team of specialists works together to deliver an accurate diagnosis and coordinated care for our patients all under one roof. This collaboration helps families avoid the time and stress of going to multiple offices. We understand that EB involves complex skin, wound-healing, genetic, nutritional, pain and psychosocial issues — and that’s why our unique program addresses every aspect of EB treatment.

Who we treat at the Epidermolysis Bullosa Multidisciplinary Clinic

We provide care for individuals of all ages — from infants newly diagnosed with EB, to teenagers and adults who live with EB. Whether you are seeking a first-time diagnosis, a second opinion or ongoing management of EB, we have the experience and expertise to support you or your child.

Our clinic focuses on all major EB subtypes, including simplex, junctional, dystrophic and kindler. We work closely with your primary care physician, dermatologist and other providers to coordinate initial care and follow-up appointments.

Why choose us for epidermolysis bullosa care

• Fully coordinated multidisciplinary team: We bring together dermatologists, geneticists, wound care nurses, physical/occupational therapists, nutritionists, pain management specialists, social workers and psychologists so your child (or you) can receive comprehensive care in a single visit.
• Specialized expertise in EB: Our physicians and care providers have significant experience treating EB so we are familiar with the unique challenges of this condition.
• Coordination with other specialty services: Through our multidisciplinary clinic, we can connect you to other services you may need for treatment and management of EB. We work with gastroenterology, orthopedics, hematology and anesthesiology teams for procedures such as esophageal dilations, hand surgeries, iron infusions and sedated procedures, always ensuring safe, seamless care.
• Streamlined scheduling: Where possible, we schedule multiple specialist evaluations, diagnostics and therapy sessions on the same day to reduce travel time and stress on families.
• Family-centered care and support: We recognize that EB affects daily life, schooling, work and family functioning. Our program includes education, support, transition planning (for adolescents moving to adult care) and assistance accessing community resources.
• EB research and innovation: As part of our institution’s commitment to rare skin disorders, we participate in clinical trials, research and evidence-based care practices to ensure you receive the most current treatment options and best practices. Our care team can help provide access to innovative treatment options, including prademagene zamikeracel (Zevaskyn) procedure, and topical therapies such as beremagene geperpavec-svdt (Vyjuvek) and birch triterpenes (Filsuvez).

New breakthroughs in epidermolysis bullosa care

The epidermolysis bullosa team at Children’s Colorado provides coordinated care for children and adults with recessive dystrophic epidermolysis bullosa (RDEB) who may be eligible for treatment with Zevaskyn (prademagene zamikeracel) — the first autologous cell-sheet gene therapy for the treatment of RDEB wounds. Zevaskyn treatment involves collecting a patient’s skin cells, genetically correcting them to express functional type VII collagen, expanding them into cell sheets and surgically applying them to chronic wounds. Patients are hospitalized for 5 to 7 days after surgery and require lifelong follow-up care to monitor healing and safety.

Clinical data showed that patients with treated wounds had significant healing plus a reduction in pain and itch compared to the standard of care of frequent bandage changes.

Contact the Multidisciplinary Epidermolysis Bullosa Clinic

We know that living with EB can feel overwhelming — you don’t have to navigate it alone.

What you need to make an appointment: A referral to the clinic, prior medical records (especially dermatology/wound-care notes), genetic test reports (if available), list of current medications and dressings and any recent wound-care images.

Scheduling: To schedule your first visit, please call our clinic at 720-777-6810.

Clinical intake: Prior to your appointment, a nurse will call you for clinical intake information. This includes health history, current wounds and goals for attending the clinic. This will need to be completed about 2 weeks prior to your clinic appointment.