Help us reform our health system to include all New Zealanders living with a Rare Disorder. It is vital that we establish a National Rare Disorder Framework for these 300,000 New Zealanders and their whanau to ensure they get the healthcare they deserve.

Currently in New Zealand, if you have a Rare Disorder, you will struggle to find the right diagnosis, medication and support. We urge the Government to develop a National Rare Disorder Framework so that rare disorders are cared for within our healthcare system, just like in other OECD countries including Australia.

To help make this happen we need to submit a petition to parliament with 10,000 signatures. We need 5,571 signatures by 17th March 2021. Please help us by signing and sharing this petition.

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We are also asking for donations to help us continue to support people living with a rare disorder and their whanau. Can you help? DONATE


You can also help us by sharing our donation page, click on this link, copy the URL from the top of the browser window, then paste it into a facebook post, or email it to your friends. If you can't access the link in your browser, you can also copy and paste the following: