ERN-Skin
ERN Skin e Covid-19 REB
Pazienti affetti da malattie rare della pelle e COVID-19

ERN-Skin supporta pienamente i pazienti e le loro famiglie durante questo periodo di pandemia di COVID-19 e fornisce le seguenti raccomandazioni e informazioni ai pazienti affetti da malattie rare della pelle

Completed EB Clinical Practice Guidelines

The following CPGs are already completed and can be downloaded here.

Gestione del cancro nell'Epidermolisi Bollosa

Cancer Management

Management of cutaneous squamous cell carcinoma in patients with epidermolysis bullosa: best clinical practice guidelines / Published 2016

Cura del piede nell'epidermolisi bollosa

Foot Care

Foot care in Epidermolysis bullosa: Evidence‐based Guideline | Published 2019 | Funded by DEBRA UK

Diagnosi di Laboratorio di Epidermolisi Bollosa

Laboratory Diagnosis

Clinical Practice Guidelines for Epidermolysis Bullosa Laboratory Diagnosis | Published 2019 | Funded by DEBRA Austria

Terapia occupazionale per Epidermolisi Bollosa

Occupational Therapy

Occupational therapy for epidermolysis bullosa: clinical practice guidelines | Published 2019 | Funded by DEBRA of America

Aassistenza sanitaria orale per bambini affetti da EB

Oral Health Care

Clinical practice guidelines: Oral health care for children and adults living with epidermolysis bullosa | Published 2020 | Funded by DEBRA UK

Aassistenza sanitaria orale per bambini affetti da EB

Pain Management

Pain care for patients with epidermolysis bullosa: best care practice guidelines / Published 2014

Gestione della stitichezza per bambini e adulti con Epidermolisi Bollosa

Preventative Nutritional Care

Constipation management for children and adults with epidermolysis bullosa (EB). An expert working group consensus / Published 2020

Assistenza psicosociale Epidermolisi Bollosa

Psychosocial Care

Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guidelines | Published 2019 | Funded by DEBRA Norway

Cura della pelle e delle ferite Epidermolisi Bullosa

Wound Care

Best Practice Guidelines: Skin and Wound Care in Epidermolysis Bullosa / Published 2017