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Child with EB with dressings on hands and arms sitting in front of a care taker

Specialized care for a rare disease
Clinical Practice Guidelines for EB

Clinical practice guidelines (CPGs) are recommendations for physicians for the treatment and care of patients with certain conditions. The guidelines are based on evidence gained from medical science and the practice experience of experts.

EB Clinet supports DEBRA International in undertaking a long-term initiative to develop clinical practice guidelines (CPGs) for EB.

Doctor showing a little girl with epidermolysis bullosa how to do dressings on the childs soft toy

Completed EB Guidelines

Find here all completed Clinical Practice Guidelines for download.

Completed CPGs
Hand in dressings of a child with EB being hold by the hand of a care person

Future EB Guidelines

See which guidelines are already in development and which topics are planned.

Future EB Guidelines
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We need you!

With your experience you can help to improve the lives of people living with EB - become part of a panel for EB guideline development.

More information

Clinical Practice Guidelines

  • offer instructions for adequate treatment based on the best available scientific evidence and a broad consensus
  • ensure appropriate care and support the decision-making process in clinical practice
  • encourage and provide suggestions for further education
  • foster the efficient use of resources
  • build a basis for quality control
  • identify lacks in the existing literature and support corresponding future research
FURTHER INFORMATION

 

EB Healthcare Guidelines

For each one of the published CPGs a patient version (EB healthcare guideline) will be developed. Patient versions take the information and recommendations from the CPGs and put these into a format and language that is easily understood.

Discover the EB healthcare guidelines

EB Handbook

The EB Handbook provides a wealth of information and practical guidance for those living with the many challenges associated with EB.

Discover the EB Handbook

DEBRA International

DEBRA International is one of the few patient organizations worldwide that promotes the development of guidelines for clinical practice.

Find out more

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