What we do

NZORD offers a central starting point for patients and families affected by rare disorders, and helps families and patients find the essential information and support groups they require.

NZORD operates on a national level and provides mostly “online” information resources for people with rare disorders and their families.  NZORD provides direct support to assist small groups to operate effectively by providing:

  • A directory of 250 support groups
  • 45 free websites
  • 6 online forums for support groups
  • Regular newsletters

NZORD works with rare disease groups and ensures their concerns and interests are communicated to health officials during consultation processes, this ensures that collectively our rare voices can be heard.