Meet some of the 300,000 people living with a rare disorder in New Zealand. If you would like to share your personal story tell us here.

Mar 22, 2020, 3:16 PM
Lizzie's story

We handle each health, education and social ‘portfolio’ separately. We tell her story again and again and again.

Mar 18, 2020, 1:22 PM
Susan's story

There are no rules. You can go without symptoms for years, then it can take you out in a matter of hours.

Feb 1, 2020, 9:00 AM
James' story

Travelling this journey of rare disorders is isolating, exhausting, frustrating and it feels like there is no equality.

Jan 5, 2020, 4:13 PM
Shirley's story

His parting words to me were that I "would be in a wheelchair within five years so get used to the idea.”

Jan 5, 2020, 12:29 PM
Roger's story

When I was growing up, I didn’t think of myself as being any different to other children.

Oct 9, 2019, 9:45 AM
Carol-Anne's story

I believe we deserve the same respect as anyone else - we shouldn't have to fight to get available treatments funded.

Aug 19, 2019, 10:20 AM
Malany's story

I only wish that the quality of mine and other’s lives could be improved with a bit more care and funding.

Jul 18, 2019, 10:57 AM
Natalie's story

We all just assumed that NZ would follow suit and were devastated when PHARMAC decided to defer their decision.

Apr 4, 2019, 3:49 PM
Kim's story

DNA testing can’t match my strain and testing isn’t advanced enough for that to be a possibility in my lifetime.

Apr 1, 2019, 4:12 PM
Jarod's story

What would be great is if doctors had more understanding towards parents.