• Supported many individuals without any other similarly affected NZ families to link with, and provided assistance and information to many support groups to build their organisation.
• Successfully lobbied for a specialist metabolic service for NZ, to provide expert advice and care for those affected by rare and complex metabolic conditions.
• Taken an active role in the hearings of the Royal Commission on Genetic Modification. Besides submitting substantial evidence, we monitored all of the written briefs of evidence and verbatim transcripts, cross-examined witnesses, provided the only rebuttal evidence heard by the Commission, and presented closing submissions.
• Contributed to public debate and education about current and likely future benefits of genetic modification, and related biotechnology such as xenotransplantation and stem-cell research.
• Provided sector feedback to Pharmac on consultations, and made submissions on human rights, discrimination and public law obligations, in relation to funding of pharmaceutical treatments for rare disorders.
• Circulated information/discussion documents to rare disease support groups and co-ordinated feedback to Government agencies and the Ministry of Health on several health strategies and policy issues.
• Made written submissions and oral presentations to ERMA in support of AgResearch's transgenic cows application.
• Contributed to a National Health Committee review of genetic testing in New Zealand, and to a later advisory group reviewing clinical genetic services.
• Took a leading role in the New Zealand Carers Alliance and engaged with government to develop a Carers Strategy for New Zealand.

Our work continues...

We are guided by our mission and the priorities that flow from that. Our page on how NZORD can help, shows our approach to these tasks, and our News and Issues pages give more information on our current work.