RDNZ | Stories project

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.

Apr 1, 2019, 4:12 PM

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

Apr 1, 2019, 4:08 PM

I would love to see this inequality changed as it seems to me that it should be based on need rather than cause.

Feb 28, 2019, 2:38 PM

I have some amazing doctors who make me feel heard and respected, instead of simply being a number or condition.

Feb 28, 2019, 9:36 AM

We like to focus on what Evie can do, rather than what she can't.

Feb 28, 2019, 9:29 AM

Join groups, ask questions and ask for help.

Feb 21, 2019, 4:16 PM

When your child has a rare syndrome, life can get very complicated and lonely.

Dec 18, 2018, 4:17 PM

It has not stopped us ensuring that Logan's life is one crammed full of amazing experiences.

Aug 6, 2018, 4:19 PM

I've asked myself since if it would it have made any difference all those years ago if I had known?

Jun 21, 2018, 4:22 PM

Not having a diagnosis means that Olivia is not put in a box and her possibilities are endless.

Jun 12, 2018, 4:27 PM

It’s not your situation that determines your mind, but the way that your mind determines your situation.