This study is currently recruiting participants.

Primary Outcome Measures: To evaluate the safety and tolerability of Tβ4 administered topically once daily [ Time Frame: 56 days ] [ Designated as safety issue: Yes ]

This study is currently recruiting participants.

We are screening subjects with DEB to evaluate characteristics of the subjects and their cells in order to develop new strategies of therapy.

This study is not yet open for participant recruitment.

This study is currently recruiting participants.

This trial will create a graft, which the investigators call "LEAES," of the patient's own skin that has been genetically engineered in the investigators lab to express this missing protein.

Ms Ross said the fun event would help raise awareness of the rare condition which sees the skin and internal body linings blister at the slightest knock or rub, causing painful and open wounds...

Scientists at the University of NSW have made a remarkable discovery while trialing a new treatment for the potential fatal skin disease epidermolysis bullosa.

The aim of the collaboration with Irwin McLean, Professor of Human Genetics and Head of Molecular Medicine at Dundee, is to develop new treatments for Recessive Dystrophic Epidermolysis Bullosa (RDEB)...

In this study, the effects of heat stress on keratin aggregation in immortalized cells from two patients with EBS (KRT5) and a healthy control were examined with and without addition of various test compounds

Abstract

The objective of this study was to explore the experiences of young people with Epidermolysis Bullosa Simplex (EBS). Eleven participants aged 10 -14 years were interviewed and Interpretative Phenomenological Analysis was employed. A key theme was 'self as different'. This related to experiences of negative treatment and exclusion from peers; a lack of understanding of others about the condition; and a sense of the self as 'wrong'. Findings indicate the importance of providing appropriate psychological and peer support, as well as wider community education and intervention, as part of the holistic treatment of young people with this chronic, painful and visible skin condition.

Presented in this article is a case study of a patient admitted to the CHB NICU with the diagnosis of epidermolysis bullosa (EB). The focus of this article is not the disease itself but the education that was provided to the patient's family and the staff at the outside facility on the day of transfer. This education was provided within a relatively short period, bringing the family unit back together and closer to home. Furthermore, this education enabled providers who were inexperienced in caring for a patient with EB to learn from an expert nurse in real time.

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Free full text article from the Dermatology Online Journal.

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From ebnurse.org

We believe that this case demonstrates the potential efficacy and healing of a large superficial and nodular BCC in a patient with HS-RDEB. Although surgery unfortunately could not be avoided, we would like to highlight that the reaction generated by PDT was very well tolerated by the...