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

Future EB Guidelines

DEBRA International is currently very active in the development of further guidelines. Almost 300 volunteers, EB healthcare professionals, as well as people living with EB, are working hard, to create these tools for better treatment of EB. Patient versions of some of the guidelines are also planned.

Currently, the following guidelines are in development and should be published either 2019 or 2020:

  • Nutrition: Constipation
  • Podiatry
  • Physiotherapy
  • Hand Surgery and Rehabilitation Therapy
  • Anaemia
  • Pregnancy, Childbirth, and Aftercare
  • Sexuality
  • Oral Health Care (Review)

For another important topic, a panel of international experts is currently working on other helpful recommendations:

  • Infographics for countries with limited access to resources for EB care

For further information please visit the website of DEBRA International

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