Epidermolysis Bullosa (EB) Center

Coordinated Care

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 complete care for your child.

  • Our nurse coordinator will help answer questions, collect records from outside institutions, and verify insurance benefits.
  • Our nurse coordinator will also help you identify needed specialists and get appointments scheduled. 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 an electronic medical record and scheduling system.
  • 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 a local Ronald McDonald House and our Child and Family Life Services can help you get extra support while making your child’s visit engaging for everyone in the family.

It is important to treat the whole patient, we have found that children with EB benefit from having health care staff who understand their unique needs and who work cooperatively with their families. Our specialists are prepared to address the unique medical needs of EB in areas including:

Anesthesiology

Anesthesiology

Our pediatric anesthesiologists thoroughly evaluate every infant, child or adolescent with epidermolysis bullosa and highlight the special skin care needs, upper airway and breathing issues, vascular access problems and special concerns that are relayed by their parents, other consultants and work with parents and health-care providers to conduct safe and comprehensive anesthesia care in this well-identified high-risk population.

Cardiology

Cardiology

We provide evaluations of cardiac status for any patient with EB that include cardiac examination; non-invasive imaging consisting of electrocardiogram, echocardiogram, 24-hour EKG monitoring, cardiac magnetic resonance imaging and invasive evaluation, if indicated, consisting of cardiac catheterization.

Dentistry

Dentistry

Dentistry

Gastroenterology

Gastroenterology

Gastroenterology

Genetic Counseling

Genetic Counseling

Genetic Counseling

Integrative Health and Well-Being

Integrative Health and Well-Being

Integrative Health and Well-Being

Interventional Radiology

Interventional Radiology

We provide the services of central venous access and esophageal dilation. In addition, we have done some rare cases of embolization for bleeding. We work closely with the gastroenterology service. We are supported by the general pediatric radiology department who perform all of our esophagrams for us before we do any dilation procedures, and who do any ultrasound follow-ups that we need to check for venous patency after we have installed central lines.

Ophthalmology

Ophthalmology

Ophthalmology

Orthopedics/EB Hand Center

Orthopedics/EB Hand Center

Orthopedics/EB Hand Center

Palliative & Pain Management Care

Palliative & Pain Management Care

Palliative & Pain Management Care

Physical and Occupational Therapy

Physical and Occupational Therapy

Physical and Occupational Therapy

Surgery

Surgery

Surgery

Social Work

Social Work

Social Work