EB – Inherited Epidermolysis Bullosa and skin fragility syndromes – Darier disease – Hailey-Hailey disease
Thematic group
Chairs and Focus
Related Conditions
Participating Reference Centres
- AOU Padua – Azienda Ospedale Università di Padova
- APHP – Hôpital Necker-Enfants malades
- ASL Tuscan Centre
- CHU de Rouen
- Colentina Clinical Hospital
- EB Haus Austria
- Fondazione Policlinico Universitario A. Gemelli – Roma
- Guy’s and St Thomas’ NHS Foundation Trust – Dept of oral Dermatology
- Helsinki University Hospital
- Hospital Na Bulovce
- Hospital of Lithuanian University of Health Sciences Kauno Klinikos
- IRCCS IDI Foundation Luigi Maria Monti – Rome
- Klinikum der Universität München
- Saint Anna University Hospital in Brno
- Spedali Civili di Brescia – Brescia
- Universitätsklinikum Erlangen
- Universitätsklinikum Freiburg – Center for Skin Fragility & Epidermolysis bullosa
- Universitätsklinikum Schleswig-Holstein
- Universitätsklinikum Würzburg
- University Hospital Centre Zagreb
- University Hospital Leuven
- University Medical Centre Groningen
Dashboard
Legend for guidelines and publications
Clinical Outcome Measures
No public document yet
Emergency Cards
- Emergency Card EB Italian version – Foundation IRCCS CA’Granda Ospedale Maggiore polyclinic, Milan
- Emergency card EB Czech version – University Hospital Brno, EB Centrum CR
- Emergency Card EB Dutch version – University Hospital Leuven
- Emergency Card EB Dutch version – University Medical Centre Groningen
- Emergency Card EB English version – Birmingham Children’s Hospital NHS Foundation Trust
- Emergency Card EB English version – Guy’s and St Thomas’ NHS Foundation Trust
- Emergency Card EB French version – University Hospital Leuven
- Emergency Card EB German version – EBHaus Austria
- Emergency Card EB German version – Universitätsklinikum Freiburg
- Emergency Card EB Italian version – AOU, Bologna
- Emergency Card EB Italian version – IRCCS IDI foundation Luigi Maria Monti, Rome
- Emergency Card EB Italian version – Pediatric hospital Bambino Gesù, Rome
Guidelines & Recommendations
Management of children with Epidermolysis Bullosa: Therapeutic education for parents and carers – in ITALIAN- Management of children with Epidermolysis Bullosa: Therapeutic education for parents and carers – in ENGLISH
- Provision of Palliative and End-of-Life Care
- Consensus guidelines for diagnosis and management of anemia in epidermolysis bullosa
- Preventative nutritional care guideline
- Emergency management in epidermolysis bullosa: consensus clinical recommendations from the European reference network for rare skin diseases
Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guidelines- Occupational therapy for epidermolysis bullosa: clinical practice guidelines
- Clinical practice guidelines for laboratory diagnosis of epidermolysis bullosa
- Foot care in epidermolysis bullosa: evidence-based guideline
- Skin and wound care in epidermolysis bullosa
- Management of cutaneous squamous cell carcinoma in patients with epidermolysis bullosa: best clinical practice guidelines
- Pain care for patients with epidermolysis bullosa: best care practice guidelines
- Multicentre consensus recommendations for skin care in inherited epidermolysis bullosa
- Oral Health Care for Patients with Epidermolysis Bullosa – Best Clinical Practice Guidelines
- Psychosocial Guidance for social and healthcare professionals/ epidermolysis bullosa (EB) teams
Publications
- COL7A1 Editing via RNA Trans-Splicing in RDEB-Derived Skin Equivalents
- QR-313, an Antisense Oligonucleotide, Shows Therapeutic Efficacy for Treatment of Dominant and Recessive Dystrophic Epidermolysis Bullosa: A Preclinical Study
- Initial validation of the epidermolysis bullosa-specific module of the Infants and Toddlers Dermatology Quality of Life questionnaire
- Consensus reclassification of inherited epidermolysis bullosa and other disorders with skin fragility
- Multidisciplinary care of epidermolysis bullosa during the COVID-19 pandemic-Consensus: Recommendations by an international panel of experts
- STAT3 targeting in dystrophic epidermolysis bullosa
- ERN-Skin clinical research update for Epidermolysis Bullosa (October 2020)
Currently recruiting clinical therapy trials for Epidermolysis Bullosa (October 2020)- EGFR inhibition for metastasized cutaneous squamous cell carcinoma in dystrophic epidermolysis bullosa
- Assessment of the risk and characterization of non-melanoma skin cancer in Kindler syndrome: study of a series of 91 patients
- Biallelic KRT5 mutations in autosomal recessive epidermolysis bullosa simplex, including a complete human keratin 5 “knock-out”
- Mechanism of Oleogel-S10: A triterpene preparation for the treatment of epidermolysis bullosa
- Mechanism of Oleogel-S10: A triterpene preparation for the treatment of epidermolysis bullosa part 2
- Oleogel-S10 Phase 3 study “EASE” for epidermolysis bullosa: study design and rationale
- Identification of Rigosertib for the Treatment of Recessive Dystrophic Epidermolysis Bullosa-Associated Squamous Cell Carcinoma
- Features of Epidermolysis Bullosa Simplex due to KLHL24 Mutations in 3 Italian Cases
- Decorin counteracts disease progression in mice with recessive dystrophic epidermolysis bullosa
- Epidermolysis bullosa simplex-generalized severe type due to keratin 5 p.Glu477Lys mutation: Genotype-phenotype correlation and in silico modeling analysis
- Epidermolysis Bullosa Simplex with KLHL24 Mutations Is Associated with Dilated Cardiomyopathy
- Epidermolysis bullosa House Austria and Epidermolysis bullosa clinical network : Example of a centre of expertise implemented in a European reference network to face the burden of a rare disease
Training
- Epidermolysis bullosa and breastfeeding
- Epidermolysis bullosa and oral hygiene
- Hand mobility exercises for children suffering from epidermolysis bullosa
- Training on specific hand care for patients with epidermolysis bullosa
- Cardiomyopathy in recessive dystrophic epidermolysis bullosa (RDEB)
- Dental care pathways for patients with epidermolysis bullosa: consensus clinical position statement from the European Reference Network for Rare Skin Diseases
- Inflammatory mediators in EB
- Inflammatory mediators in EB
- Practical management of epidermolysis bullosa in the newborn: consensus statement from the European Reference Network for Rare Skin Diseases