DEBRA New Zealand is a registered charity providing access to medical advice and support for people and families affected by all types of EB.

Established in 1980, DEBRA New Zealand’s founding focus is as relevant today as it was then:

  • to support DEBRA families;
  • to ensure those with EB know they are not alone;
  • to ensure practical advice and guidance is shared;
  • to ensure clinicians and families have information on and access to current best practice care and treatment.

DEBRA NZ aims to improve the quality of life for all people living with EB


  • employs four EB specialist nurses (part-time), who work around New Zealand and assist with meeting the goals of improving care and treatment for people with EB.
  • provides those with EB and their families with emotional support, educational information, and assists them in obtaining appropriate medical, social and genetic counselling.
  • provides information to doctors and other health professionals as in most cases the first time they come across EB is when a child in their region is born with EB.
  • is a hub for spreading clinical expertise, the latest international research, and knowledge from others’ personal experiences.
  • aims to raise awareness and educate the public and medical professionals about EB.


DEBRA NZ became a charitable trust in 1985 and registered with the Charities Commission in 2008.

DEBRA NZ has three trustees: Neville Carson (chair), Jillyan Hing, and Professor Ingrid Winship.

DEBRA NZ is a member of DEBRA International.

Our director, Anna Kemble Welch, is on the executive committee of DEBRA International and an ambassador for EB Without Borders. Lea Prujean works part-time for DEBRA NZ, and is also the International Co-ordinator of EB Without Borders for DEBRA International.