Project Lead:
Amy Paller, MD
Northwestern University
Overview:
Epidermolysis bullosa (EB) is a group of rare, inherited skin disorders that causes fragile, blistering skin when exposed to minimal trauma. Patients with EB often experience poor nutrition, chronic inflammation, abnormal growth, and limited mobility that affects their bone health. With affected bone strength and health, patients are at risk of fractures that can significantly affect quality of life.
Although poor bone health in EB is an important topic to explore, there is very limited research related to this topic. Given the impact of poor bone health and fractures on children with EB, there is a great need to develop guidelines focused on screening, monitoring, and treatment practices.
Status:
This was funded through a 2023 PeDRA Consensus Guidelines Grant.
