4 November 2021

The Rare Disorders 2021 survey is here and we need YOU!

Rare Disorders have announced the launch of their 2021 Voice of Rare Disorders survey - and we need your help to make it a success.

As the Ministry of Health does not collect comprehensive rare disorder data, we have need to fill this vital data gap in the health system through our bi-annual survey.

"In 2019 we launched our first ever Voice of Rare Disorders survey, and the data we collected has been vital for our advocacy directly with the Minister of Health, health officials, Pharmac and MPs for people living with rare disorders, and through all areas of our work. The survey offers the voice of all people with a rare disorder to show the true impact and barriers faced and guides the focus on our ongoing Fair for Rare Campaign."

For this 2021 survey they would like an even bigger response from the rare disorder community to make our collective voice louder and stronger than ever. The next election is in our sights - we want to get rare disorders on the agenda, and the data from this survey will play a central role.

Please give the gift of 20-30 mins of your time to complete this survey and encourage others in your community to do the same. There may be parts that are not related to you and you can just skip these sections

Anyone living with a rare disorder in NZ, as well their whānau and carers are strongly encouraged to take this survey.

Click here to take part in the Voice of Rare Disorder Survey 2021

The survey will be open until 1 December 2021. You can find out more information on the Rare Disorders website.

Thank you so much for taking part and we promise to do our part to make your voice heard!