DEBRA International

Alternate name: DEBRA

ROR: 00gns0095

OpenAlex ID: I4405268302

Massive Transfusion Practices Around the Globe and a Suggestion for a Common Massive Transfusion Protocol

2006 · Debra L. Malone, John R. Hess, et al. · The Journal of Trauma: Injury, Infection, and Critical Care · 448

Progress in Epidermolysis Bullosa Research: Toward Treatment and Cure

2010 · Jouni Uitto, John A. McGrath, et al. · Journal of Investigative Dermatology · 115

Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guidelines

2019 · K. Martin, S. Geuens, et al. · Orphanet Journal of Rare Diseases · 95

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Progress toward Treatment and Cure of Epidermolysis Bullosa: Summary of the DEBRA International Research Symposium EB2015

2016 · Jouni Uitto, Leena Bruckner-Tuderman, et al. · Journal of Investigative Dermatology · 76

EB2017—Progress in Epidermolysis Bullosa Research toward Treatment and Cure

2018 · Jouni Uitto, Leena Bruckner-Tuderman, et al. · Journal of Investigative Dermatology · 71

Animal Models of Epidermolysis Bullosa: Update 2010

2010 · Leena Bruckner-Tuderman, John A. McGrath, et al. · Journal of Investigative Dermatology · 56

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Progress in Epidermolysis Bullosa Research: Summary of DEBRA International Research Conference 2012

2013 · Leena Bruckner-Tuderman, John A. McGrath, et al. · Journal of Investigative Dermatology · 51

The DEBRA International Visioning/Consensus Meeting on Epidermolysis Bullosa: Summary and Recommendations

2000 · Jouni Uitto, Robin Eady, et al. · Journal of Investigative Dermatology · 37

Foot care in epidermolysis bullosa: evidence‐based guideline

2019 · M.T. Khan, M. O'Sullivan, et al. · British Journal of Dermatology · 35

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Stigma associated with genetic testing for rare diseases—causes and recommendations

2024 · Gareth Baynam, Roy Gomez, et al. · Frontiers in Genetics · 31

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Neonatal epidermolysis bullosa: a clinical practice guideline

2024 · Rebecca Saad, José Duipmans, et al. · British Journal of Dermatology · 23

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Recommendations on pregnancy, childbirth and aftercare in epidermolysis bullosa: a consensus‐based guideline*

2021 · D.T. Greenblatt, E. Pillay, et al. · British Journal of Dermatology · 21

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Consensus-based guidelines for the provision of palliative and end-of-life care for people living with epidermolysis bullosa

2023 · Mark P. Popenhagen, Paola Genovese, et al. · Orphanet Journal of Rare Diseases · 20

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Transcultural Validation of a Spanish Version of the Quality of Life in Epidermolysis Bullosa Questionnaire

2022 · Alvaro Rafael Villar-Hernandez, Fernando Molero Alonso, et al. · International Journal of Environmental Research and Public Health · 17

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Supporting sexuality for people living with epidermolysis bullosa: clinical practice guidelines

2021 · Alex King, Humphrey Hanley, et al. · Orphanet Journal of Rare Diseases · 14

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Management of oesophageal strictures in inherited epidermolysis bullosa: a clinical practice guideline

2025 · May El Hachem, Tamara Caldaro, et al. · British Journal of Dermatology · 7

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Towards a roadmap for COSEB: the next steps in harmonization of outcomes for epidermolysis bullosa

2024 · Eva W H Korte, Anna M G Pasmooij, et al. · British Journal of Dermatology · 5

Harmonization of outcomes in epidermolysis bullosa: report of the Core Outcome Sets for Epidermolysis Bullosa (COSEB) kick-off meeting

2023 · Eva W H Korte, Phyllis I Spuls, et al. · British Journal of Dermatology · 4

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Patient Organizations and the Investigative Dermatology Community as Partners: DEBRA and Epidermolysis Bullosa Research

2013 · Rainer Riedl, John Dart · Journal of Investigative Dermatology · 4

2026 · Renata Linertová, Márta Péntek, et al. · Orphanet Journal of Rare Diseases · 2

The lived experience and supportive care needs of Australian parents caring for children with Epidermolysis Bullosa: a qualitative descriptive analysis

2025 · Hayley Ruf, Colin J. Ireland, et al. · Orphanet Journal of Rare Diseases · 2

Genodermatoses Picture: Difficulties Faced And Way Forward in Nepal.

2023 · Niraj Parajuli, Rabindra Baskota, et al. · Journal of Nepal Health Research Council · 2

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Therapeutical Approaches

2009 · Christoph M. Lanschuetzer, Elke Nischler, et al. · Springer eBooks · 1

The Invisible Cost: Contemporary Economic Valuation of Unpaid Care in Epidermolysis Bullosa Across Six European Countries

2026 · Christine Bodemer, Ritu Jain, et al. · Research Square

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EE605 Out-of-Pocket Expenditures of Families Affected by Epidermolysis Bullosa in Europe

2025 · Renata Linertová, Christine Bodemer, et al. · Value in Health

Works count: 27

Citation count: 2,148