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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 are planned to be published in 2021:

  • Sexuality
  • Physiotherapy
  • Pregnancy/childbirth/aftercare
  • Hand surgery and rehabilitation
  • Management of anaemia

Expert panels are already working on these further guidelines which should be published later: 

  • Neonatal care
  • Enteral and parenteral feeding
  • Palliative care
  • Transition
  • Complementary, Alternative, and Integrated Medicine

For further information please visit the website of DEBRA International

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