What We Do

Projects and Research

DEBRA NZ is actively involved in ongoing projects to improve the quality of life of people with EB, including:

DEBRA NZ families are also involved in International EB research projects.

Advocacy

DEBRA NZ advocates on behalf of its members to ensure government departments, District Health Boards and educational facilities know about the needs of people with EB and the needs of their families and caregivers. This is especially important due to the rarity of EB in the general population.

Managing the specialist EB Nurses

Few medical professionals, nurses or doctors, in New Zealand actually have experience with EB

 

Few medical professionals, nurses or doctors, in New Zealand actually have experience with EB.

The Specialist EB Nursing Service set up by DEBRA NZ in 2002 is now funded by the National Health Board to help bridge the knowledge gaps for medical professionals and to advise and support families, providing the best possible care for Kiwis with EB.

Travel - Sending Kiwi kids to International Conferences and Camps

The opportunity to meet a large group of other children or teens with a similar type of EB is a really valuable experience for our Kiwi kids. The three-yearly DEBRA Australia conferences and visiting Dream World or Australia Zoo, or attending an EB Camp in the USA is for EB kids a dream come true that unfortunately cannot be replicated here in New Zealand with our smaller population.

Celebrating Inclusive Community – Saying Thank You

  • Newtown Festival Street Fair.

    Join us at the Newtown Festival Street Fair

Every year at the beginning of March some can-do dudes with EB, a DEBRA NZ Trustee or two and local volunteers turn out in force to provide the site crew for the amazing Newtown Festival Street Fair.

Yes, this volunteering means DEBRA NZ gets a donation from the Newtown Festival but mostly its about ‘paying it forward’ and helping provide the opportunity for 70,000 people to enjoy 350 stalls, 47 music and performance acts on 6 stages and the wonderful atmosphere at New Zealand’s largest annual Street Party!

Come to Newtown on the first weekend in March, along with most of Wellington and celebrate life at its full-on best!

Newsletters – Keeping in Touch

DEBRA NZ periodically emails newsletters. This is a cost effective and low impact way of keeping our spread-out DEBRA family in touch with each other, celebrating achievements, raising public awareness and saying thank you to those generous supporters who as Friends of DEBRA donate to our projects.


  

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

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