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.
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- offers practical help for people supporting family or friends who are older and need assistance, or who have a health condition, a disability, an injury or mental health, alcohol and drug issues.
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.
Here are some resources you may find useful:
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.
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.
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 NZFacebook 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.