Patient resources
Financial Support
Here you will find information about some of the financial support you may be eligible for from the government to assist with the costs associated with your rare disorder.
Patient Services
Here are some of the services available in the health and disability sector in New Zealand:
Genetic Health Services - provide expert genetic diagnostic and genetic counselling services, as well as assistance, advice and education in managing genetic conditions. Their services are publicly funded for NZ residents as part of New Zealand’s public health system.
Ministry of Health Disability Support Services - information on the role of Disability Support Services, the disability support services that are funded, current projects and programmes.
Your Guide to Disability Support Services - a directory of general information, services and community support available for people who have a disability and their families.
The Nationwide Health and Disability Advocacy Service - offers free, independent, and confidential advice and support to help you resolve issues with health and disability services.
The Health Navigator - provides one place to find reliable and trustworthy health information and self-care resources.
KidsHealth - accurate and reliable information for NZ parents and whānau about the health and wellbeing of tamariki & rangatahi in Aotearoa.
KidsHealth - advice for parents about complementary and alternative medicine
Parent to Parent - a nationwide not-for-profit organisation formed in 1983 by parents and professionals to support the families of babies, children, teens and adults with any type of disability or health impairment.
Carers NZ - acts as the national peak body providing information, advice, learning and support for carers in our network
Patient Resources
Here are some resources you may find useful:
My Health Passport - a booklet that you can carry with you when you visit health and disability services. The booklet has information about how you want people to communicate with you and support you when you use health or disability services. (Note: It is not a substitute for a patient’s medical records.)
CrowdMed - provides a collaborative approach for solving complex medical cases online. The extensive knowledge of our case-solving community allows patients to explore all possible medical diagnoses and solutions, providing clear paths for them to follow towards a cure.
Rare Chromosome & Gene Disorder Guides - free Information Guides to specific chromosome and gene disorders, as well as guides translated into various languages.
AnxietyNZ Trust - provides a free and confidential helpline 24/7 for people of any age who experience all forms of anxiety, including Panic Attacks, Phobias and Obsessive Compulsive Disorders and to family or friends supporting someone with anxiety.
Disability Support Guide - designed to help parents and families of children and young people who have been recently diagnosed with a disability.
A Guide for Carers - lets you know about a range of help available for people who care for and support family, whānau, āiga or friends with a physical or mental health condition, a disability, an injury or an illness.
Parent to Parent resource hub - From videos to articles to podcasts, everything you need to further your learning of disability, on any topic you can think of!
Awhi Ngā Mātua - A community for parents of disabled and medically fragile tamariki (children).
Pain management webinar - Dr Buzz Burrell
Disease Maps - world maps of chronic and rare diseases and other syndromes and conditions.
Rare disorder support group advocacy webinar: email Kim for the recording link
Rare disorder support group media training webinar: email Kim for the recording link
Online Community Support
Rare Disorders NZ Facebook page - stay updated on our news and on important developments and events in the sector, both nationally and internationally.
Community Group on Facebook - for anyone in New Zealand with a rare disorder and their whānau to share stories and information, or just to connect with people going through similar experiences as yourself.
Facebook group specific to Māori - private group for Māori who live with a rare disorder and their whānau to share stories, information and experiences.