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Doctor doing a dressing for the soft toy of a little girl with epidermolysis bullosa

Completed EB Clinical Practice Guidelines

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

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Anemia

Consensus guidelines for diagnosis and management of anemia in epidermolysis bullosa | Published 2023 | Funded by DEBRA Canada

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Cancer Management

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

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Foot Care

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

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Hand Surgery and Hand Therapy

Hand surgery and hand therapy clinical practice guideline for epidermolysis bullosa | Published 2022 | Funded by DEBRA UK

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Laboratory Diagnosis

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

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Occupational Therapy

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

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Oral Health Care

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

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Pain Management

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

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Physiotherapy

Physiotherapy for epidermolysis bullosa:clinical practice guidelines | Published 2021 | Funded by DEBRA of America

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Pregnancy, Childbirth and Aftercare

Recommendations on pregnancy, childbirth and aftercare in epidermolysis bullosa: a consensus-based guideline | Published 2021 | Funded by DEBRA UK

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Preventative Nutritional Care

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

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Provision of Palliative and End-of-Life Care

Consensus-based guidelines for the provision of palliative and end-of-life care for people living with epidermolysis bullosa | Published 2023 | Funded by DEBRA UK

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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

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Supporting Sexuality

Supporting sexuality for people living with epidermolysis bullosa: clinical practice guidelines | Published 2021 | Funded by DEBRA Norway

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Wound Care

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

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Wound Care (Spanish)

Guía de buena práctica clínica: Cuidado de la piel y de las heridas en la Epidermólisis Bullosa | Published 2017

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