The challenges of living with and managing epidermolysis bullosa: insights from patients and caregivers

Impact of a rare chronic genodermatosis on family daily life: The example of epidermolysis bullosa

(2018) H Dufresne et al.   BRITISH JOURNAL OF DERMATOLOGY

Living with a rare disorder: a systematic review of the qualitative literature

(2017) Charlotte von der Lippe et al.   Molecular Genetics & Genomic Medicine

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

(2016) Jouni Uitto et al.   JOURNAL OF INVESTIGATIVE DERMATOLOGY

Epidemiology of Inherited Epidermolysis Bullosa Based on Incidence and Prevalence Estimates From the National Epidermolysis Bullosa Registry

(2016) Jo-David Fine   JAMA Dermatology

Pain care for patients with epidermolysis bullosa: best care practice guidelines

(2014) Kenneth R Goldschneider et al.   BMC Medicine

Inherited epidermolysis bullosa: Updated recommendations on diagnosis and classification

(2014) Jo-David Fine et al.   JOURNAL OF THE AMERICAN ACADEMY OF DERMATOLOGY

Multicentre consensus recommendations for skin care in inherited epidermolysis bullosa

(2014) May El Hachem et al.   Orphanet Journal of Rare Diseases

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

(2013) Leena Bruckner-Tuderman et al.   JOURNAL OF INVESTIGATIVE DERMATOLOGY

Prioritization of therapy uncertainties in Dystrophic Epidermolysis Bullosa: where should research direct to? an example of priority setting partnership in very rare disorders

(2013) Paula Davila-Seijo et al.   Orphanet Journal of Rare Diseases

Family Burden in Epidermolysis Bullosa is High Independent of Disease Type/Subtype

(2010) S Tabolli et al.   ACTA DERMATO-VENEREOLOGICA

Inherited epidermolysis bullosa

(2010) Jo-David Fine   Orphanet Journal of Rare Diseases

Factors affecting quality of life in epidermolysis bullosa

(2010) Calogero Pagliarello et al.   Expert Review of Pharmacoeconomics & Outcomes Research

Quality of life evaluation in epidermolysis bullosa (EB) through the development of the QOLEB questionnaire: an EB-specific quality of life instrument

(2009) J.W. Frew et al.   BRITISH JOURNAL OF DERMATOLOGY