Information & Support
WE'RE HERE TO HELP
The DEBRA New Zealand whanau includes mums and dads from all over New Zealand who have been where you are now.
You, like many others before you, may have never heard of EB before the birth of your child. We are here and available if you want to talk with someone.
By now your medical team should have informed one of our Specialist EB Nurses who will visit you. They will visit and help fill in the gaps for both you and those around you, including the medical professionals who are caring for baby and you.
EB wounds and blisters are painful when they happen but with careful handling, specialist dressings and padding EB babies can be comfortably protected from friction and damage. It is very important to hold dressings in place without using sticky tape.
Please check that your doctors or nurses have accessed the expertise of the Specialist EB Nurses. This is a funded service to ensure EB babies anywhere in New Zealand get the best possible care. Some aspects of correct EB care can be life-critical for fragile newborns.
In New Zealand all people with EB are provided with specialists dressings for free.
You, a family member or a friend can contact DEBRA NZ and arrange for the Specialist EB Nurses to provide help and advice for you and your baby.
In the meantime, explore the resources on our website, including:
We can’t promise that everything will be alright, but we can promise to provide access to the best information and advice available world wide, and to give support to you and your baby.
EB knows no boundaries and as a result children all over the world are members of the DEBRA family.
All the best!