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, 4:08 PM
Denise's story

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
Sarah's story

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
Evie's story

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

Feb 28, 2019, 9:29 AM
Preston's story

Join groups, ask questions and ask for help.

Feb 21, 2019, 4:16 PM
Bernadette's story

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

Dec 18, 2018, 4:17 PM
Logan's story

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

Aug 6, 2018, 4:19 PM
Elizabeth's story

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
Olivia's story

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

Jun 12, 2018, 4:27 PM
Samantha's story

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

Jun 6, 2018, 11:58 AM
Luca's story

It's so hard to believe now how small he was and what he's been through.