EB Research

New Zealand EB Research

New Zealand is world-leading in developing independence, well-being and the quality of life for those with fragile skin.

  • DEBRA NZ advisors Dr Graham Kemble Welch and EB nurse Hilda Dresdner first introduced care plans based on pain-free saline bathing way back in 1982.
  • Architects, psychologists and medical experts connected with DEBRA NZ have pioneered the design and development of specialist home-based bandage bathrooms, which allow the rest of the family home to be as EB free as possible.
  • The ideas and support shared through the annual forum of Family Camp consolidate family well-being, and a sense of not being alone.
  • The week long EB Adventure Camps are ground-breaking world-leading Kiwi adventure life style applied in a way that builds independence and confidence for those with EB, while having damn good fun! The volunteer camp crew deploy a wealth of unique expertise that has been written up in JAAD, the Journal of the American Academy of Dermatology.

Because of the rarity of EB, and New Zealand’s small population, little research into finding a cure is being conducted here. However members of the DEBRA NZ family are involved in some research into wound healing and wound prevention, including trials with Keragel, and designing a proto-type protective bandage suit.

International EB Research

Members of the DEBRA NZ family have and do take part in international studies and trials of products, wound care management practices and medicines which can include genetic studies. These are run by medical universities in Australia, UK/Europe, the USA and Japan.

Eventually this research may change the lives of those with EB and or prevent its recurrence.



  

+64 (0)4 389 7316   debra@debra.org.nz   Contact an EB nurse

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