The EB Clinical Nurse Specialists

DEBRA NZ founded the EB Specialist Nursing Service in 2002 to support people with the rare skin condition Epidermolysis Bullosa (EB).  

On this page:

  • About the nursing service
  • Contact an EB nurse

About the nursing service

Our EB Clinical Nurse Specialists provide support and advice to those living with EB and their families and assist local clinicians and District Health Boards who may not be familiar with the latest best practice in EB management. Based in Auckland, Hamilton and Christchurch, the Specialist Nurses are available to visit and advise on EB care anywhere in New Zealand. See Meet the EB Nurses for profiles of our nursing team.

The DEBRA nurses are in contact with expert EB nurses and clinicians around the world to ensure they have access to the best information and advice.

When a new baby is born with EB, it is very important the EB Nurses are contacted as early possible. They can visit within hours or days, depending on the urgency. Some aspects of correct EB care can be life-critical for newborns.

For children and adults with EB the Specialist EB Nurses overview and advice can contribute to reducing severe pain and increasing wound healing. Home based care-plans minimise infections and avoid unnecessary hospital admissions. The wellbeing of the whole EB family unit is a primary focus.

When someone with EB requires surgery the EB Nurses can act as consultants and assist in theatre to minimise skin damage.

DEBRA and the EB Nurses encourage contact with other EB families for support, understanding and advice.

The EB Clinical Nurse Specialists contribute to maintaining the NZ National EB Patient Register which then allows New Zealanders with EB the right to access specialist dressings for free.

EB is rare, but you are not alone. DEBRA and the EB nurses encourage contact with other EB families for support, understanding and advice. If you would like to be put in touch with another family, please let one of the nurses know or contact DEBRA NZ.

Contact an EB nurse

Working hours

The EB nurses work part-time, mainly between 9am and 5pm weekdays.

For non-urgent inquiries please try to contact them between these hours, but for urgent concerns contact the EB nurses or DEBRA NZ any time.

Home visits by the EB nurses are arranged on an individual basis at times and frequencies that best meet the needs of clients and families.

How to contact the nursing service

  • Phone: Please leave a message if your call is not answered, or send a text. 
  • Email: The Nurses will reply as soon as they can.
  • or through DEBRA NZ.

AUCKLAND & UPPER NORTH ISLAND

CENTRAL NORTH ISLAND

LOWER NORTH ISLAND & SOUTH ISLAND

See Meet the EB Nurses for profiles of our nursing team.