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
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
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
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
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