How we can help
There are a number of ways NZORD can help you. Listed below are the services we provide, if you have any further questions, please contact us.
We help you find information
Some patients and families affected by rare disorders have used the Internet to find within days, what others have only been able to glean over decades. This web site and our support group network offer channels through which more people can access this knowledge quickly. Our directory is used by clinicians to provide their patients with links to support groups. Better informed patients and families leads to better access to clinical care and disability support and can enhance opportunities for participation in research.
We help groups get established
Advice is available on incorporation and charitable status. We provide a free listing in our directory of support groups, plus free websites and discussion forums for rare disease groups to communicate with their members, and to link to overseas groups for the same condition.
We promote research
NZORD believes that increasing knowledge of the human genome, and advances in medical science offer great opportunities to improve the health of those affected by rare disorders. They can come out of the "too few - too small - too hard - too bad" basket and have their day in the sun. We promote research efforts to improve the care and treatment of rare disorders, and to work towards cures.
We provide a voice
Understanding the needs of people and families affected by a rare disease, we provide a voice to advocate for and help guide decisions in areas such as the need to improve screening and diagnosis, upgrade the clinical expertise available to treat rare conditions, drug funding priorities, and use of new technologies.
We build partnerships
As we build the rare disease support group network, we are also promoting partnerships between support groups, clinicians, researchers, government agencies and industry. The dynamics of these partnerships contribute to better information and care, new opportunities for research, and better understanding of the needs and interests of the patients and families.