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.
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.
Natalie's story
We all just assumed that NZ would follow suit and were devastated when PHARMAC decided to defer their decision.
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.
Jarod's story
What would be great is if doctors had more understanding towards parents.
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.
Sarah's story
I have some amazing doctors who make me feel heard and respected, instead of simply being a number or condition.
Evie's story
We like to focus on what Evie can do, rather than what she can't.
Bernadette's story
When your child has a rare syndrome, life can get very complicated and lonely.
Logan's story
It has not stopped us ensuring that Logan's life is one crammed full of amazing experiences.