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February 21, 2024by Katherine Devenport
21 February 2024

Developing consensus guidelines on management of osteoporosis in epidermolysis bullosa: a delphi survey

Project Lead: Amy Paller, MDNorthwestern 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 […]

Genetic Skin Disorders
Developing consensus guidelines on management of osteoporosis in epidermolysis bullosa: a delphi survey
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June 9, 2023by Katherine Devenport
09 June 2023

Quality of Life Survey in Patients with Down Syndrome and Dermatologic Conditions

Mentee Morgan DykmanUniversity of Minnesota Mentor Jillian Rork, MDDartmouth-Hitchcock Clinic Overview Patients with Down syndrome (DS) experience skin conditions more frequently and earlier in life than the average person. By […]

Genetic Skin Disorders
Quality of Life Survey in Patients with Down Syndrome and Dermatologic Conditions
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June 9, 2023by Katherine Devenport
09 June 2023

A Randomized Phase 2 Clinical Trial to Evaluate a Temporary Skin Substitute (Spincare™ Matrix) for Wound Healing in Patients with Recessive Dystrophic Epidermolysis Bullosa (RDEB)

Fellow Piru Pathmarajah, MDStanford School of Medicine Mentor Dawn Siegel, MDStanford University Overview Recessive dystrophic epidermolysis bullosa (RDEB) is a subtype of epidermolysis bullosa (EB), a rare, inherited skin disorder. […]

Genetic Skin Disorders
A Randomized Phase 2 Clinical Trial to Evaluate a Temporary Skin Substitute (Spincare™ Matrix) for Wound Healing in Patients with Recessive Dystrophic Epidermolysis Bullosa (RDEB)
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June 6, 2022by Katherine Devenport
06 June 2022

Online, Home-Based Epidermolysis Bullosa Patient Registry

Fellow Jaron NazaroffUniversity of California, Irvine Mentor Jean Tang, MD, PhDStanford University Overview Recessive Dystrophic Epidermolysis Bullosa (RDEB) is a rare skin disease caused by changes in patient’s DNA. These […]

Genetic Skin Disorders
Online, Home-Based Epidermolysis Bullosa Patient Registry
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June 6, 2022by Katherine Devenport
06 June 2022

Epidermolysis Bullosa Simplex Disease Activity and Response Tool (EBSdart): Scoring Clinical Severity and Outcomes in Epidermolysis Bullosa Simplex

Overview Epidermolysis Bullosa (EB) is a devastating hereditary blistering disease divided into subtypes based on unique mutations and location of affected skin areas. While there have been major breakthroughs for […]

Genetic Skin Disorders
Epidermolysis Bullosa Simplex Disease Activity and Response Tool (EBSdart): Scoring Clinical Severity and Outcomes in Epidermolysis Bullosa Simplex
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April 13, 2021by Katherine Devenport
13 April 2021

Deciphering the “ugly duckling” – Natural history and molecular characterization of epidermolysis bullosa nevi

Principal Investigators: Amy Paller, MDNorthwestern UniversityFeinberg School of Medicine Antonia Reimer-Taschenbrecker, MDUniversity of Freiburg, GermanyNorthwestern UniversityFeinberg School of Medicine Overview: Epidermolysis bullosa (EB) is a rare genetic skin disease with […]

Genetic Skin Disorders
Deciphering the “ugly duckling” – Natural history and molecular characterization of epidermolysis bullosa nevi
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