Helpful Hints

EB Research

Nurse Project

Upcoming events:
DEBRA New Zealand and Vodofone Warriors invite you to a wonderful night at the inaugural Butterfly Ball, at the SkyCity Convention Centre Auckland. This great event, originally planned for August, has been postponed –watch here for further details.

Previous events:

• DEBRA NZ  Conference 2006, Rotorua
  See the group Photo

• August 2006, EB Camp for teens and young adults,Ruapehu, NZ

  DEBRA Europe International Conference Salzburg October 2006

  EB Research Conference Dublin October 2006

  2005   - DEBRA NZ 25th Annual Conference

• 2004 - NZORD Conference, Partnership for Progress, Wellington

• 2004 - EB Teen Camp, Hawkes Bay, New Zealand

• 2002 - Humphrey & Ashley at Camp Discovery, Minnesota, USA

• Humphrey & the Worthys meet an EB family in California

Where is the research about EB?
Currently there is a New Zealand research project, in conjunction with Keretasse, to investigate wound healing with some new generation dressings being trialled by a small group of people with EB.

There is no genetic research being actively undertaken in New Zealand, so we rely very much on research programmes happening around the globe and look to support these wherever possible. New genetic research is being undertaken at St George Hospital in Sydney. New Zealanders with EB are being included in this study. We are very excited at the possibility of future discoveries that will reduce the pain and trauma of living with EB.

STOP PRESS -Gene therapy trials are nearly at the clinical trial stage at the Stanford University in San Francisco.

A summary of some information on research from the Debra International website.

For more details on some of the overseas research programmes go to:
Debra International Research
Debra UK

Current Initiatives DEBRA NZ is fundraising to support EB sufferers in NZ who have a range of special needs. Our aim is to establish a fund to help provide for these needs.

They include (in no particular order):

• For Hilda Dresdner Memorial Emergency Fund: to provide specialist medical services to assist in post-natal care of the next baby born with severe EB.
• Specialist EB nurses to be available to all EB sufferers for support and advice on wound care and treatment.
• For the EB Investment Trust Fund to generate a modest annual income to help pay for:
  • one off grants to EB families to cover, for example, the special shoes, clothing or equipment
• For medical research into EB.
• Annual conference / family get-together for DEBRA NZ families.
• Life Skills / Adventure Camp for teens and young adults with EB.
• Developing further connections with EB groups Internationally.

We are excited to have achieved some of our goals in recent years and hope to receive support that will make the rest possible in the near future.