NZIRDR, the New Zealand Institute for Rare Disease Research Ltd, is a charitable company incorporated in December 2004 and registered with the New Zealand Companies Office (registration number 1590317) and the Charities Commission (registration number CC25893). It is wholly owned by NZORD, the New Zealand Organisation for Rare Disorders, and exists solely to carry out the charitable purposes of NZORD in promoting research into rare diseases.

The board of NZIRDR consists of:

• Professor Jean Fleming, chairperson, Professor of Science Communication, University of Otago
• Graeme Milne, a company director with a background of applied technology and management in the food and primary processing industries
• Professor Mike Eccles, Pathology Department, University of Otago
• John Forman, executive director of NZIRDR and NZORD