If you have a rare disorder or you are caring for a person with a rare disorder, you may be entitled to financial assistance from the government.
Different government agencies provide financial assistance for different things.
The type of assistance you can get will depend on the disorder you have and its impact on your life.
The system can be quite difficult to navigate, especially when you have a disorder that is rare. You may not yet have a diagnosis, or your condition may not be well known or 'tick the boxes', making accessing support difficult.
You are not alone.
In our 2021 Voice of Rare Disorders Survey, 70% of people had a decrease in income and limited employment options due to their rare disorder. Alongside this, people with rare disorders did not feel informed at all about relevant social services that can help them (73%) or financial help they could be entitled to (71%).
The pages linked below contain information about the financial support available from different government agencies and some information about the process of checking if you can get that support.
Whaikaha funded disability support services are available to people who have a physical, intellectual or sensory disability (or a combination of these) that meet other specific criteria. Whaikaha funding can also be used to purchase respite options.
This page outlines the types of financial support from Work and Income that you may be able to get as someone with a rare disorder or someone caring for a person with a rare disorder.
Here you will find additional information about financial support that people with rare disorders and their carers may be able to get.