For Rare Disease Day on February 29, Topical Conversations will be exploring some of the rare diseases seen in dermatology. In this installment, Charlie Dunn, MD, speaks with Brett Kopelan, Executive Director of debra of America, a nonprofit organization dedicated to improving the lives of those impacted by epidermolysis bullosa (EB) and supporting the clinicians who treat this condition.
Watch Part 1 to hear Dr Todd Schlesinger discuss SCLE and dermatomyositis.
Watch Part 2 to hear Dr Naiem Issa discuss tuberous sclerosis complex and a helpful treatment tip.
Watch Part 3 to hear Dr James Del Rosso discuss new and emerging therapies for congenital ichthyoses, EB, and facial angiofibromas.
About debra of America
Founded in 1980, debra of America emerged from the dire need for institutional and public knowledge about EB. debra, which now comprises over 52 autonomous branches worldwide, works to improve the quality of life for all patients, families, caregivers, and clinicians who manage EB through programs and services, educational resources, and research funding.
Resources for patients and clinicians
debra of America's mission is to enhance the lives of those living with EB through patient services, industry partnerships, and support for clinicians and researchers engaged in innovative research. Recognizing the challenges faced by medical professionals unfamiliar with treating rare diseases, debra offers programs such as the EN Nurse Educator Program. The EB Nurse Educator serves as a trusted source of accurate information for those living with EB, their families, and the medical community. debra estimates that 20% of the calls the EB Nurse Educator receives come from medical professionals seeking guidance on how to care for patients with EB and resources to support them.
The debra website also boasts a robust How To section, which provides resources to guide patients and caregivers in making informed decisions surrounding proper EB care. These guides cover topics such as caring for wounds and blisters, caring for newborns, preparing baths, recognizing infection, choosing products, and more.
Physician resources and multidisciplinary approaches
In addition to patient-focused resources, debra also collaborates with health care professionals to cowrite clinical best practice guidelines that address anesthesia, pain management, GI issues, social and emotional well-being, and more. The complex nature of EB often necessitates a multidisciplinary approach to care, involving dermatology, gastroenterology, physical therapy, occupational therapy, pain management, psychology, and cardiology, and debra curates services for all aspects of care.
Emerging therapeutics
Exciting developments in EB therapeutics include the recent approval of the first redosable gene therapy and a topical wound healing agent. Anticipated approval for a second gene therapy, an ex-vivo approach, in May 2024 adds to the optimism. debra of America plays a crucial role in bringing the patient voice into drug development for EB, potentially easing the regulatory pathway and reducing the time it takes for new therapies to get to market.
An appeal to the dermatology community
EB is traditionally thought of as a pediatric condition within the dermatology community. As emerging therapies extend the lifespan of patients with EB, debra urges dermatology professionals to pay increased attention to adult care and treatment. With only one adult multidisciplinary center in the country, there is a need for the dermatology community to embrace the challenges associated with transitioning from pediatric to adult EB care.
Interested in getting involved with debra? Check out opportunities here.
Download How To guides for patients and clinicians here.
Read about the EB Nurse Educator Program here.
Download the Skin and Wound Care in Epidermolysis Bullosa Best Practice Guidelines here.