Parents, caregivers, and even medical professionals can feel overwhelmed when learning to care for a child with EB. If you are looking to learn more about daily wound care, disease management, or to connect with other families, these resources are a great place to start.
DebRA is a leading EB non-profit providing patient care and research support. DebRA has a wealth of information for patients, caregivers and doctors.
The first ever EB patient-reported registry has been launced at www.EBCare.org. Please visit the site and consider registering. The goal of this registry is to help advance EB research. Please click here to learn more.
EB Nurse is a source of practical information on how to care for someone suffering from EB.
EB Resource provides a supportive community for caregivers and individuals with EB to share their experiences.