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 5, 2021, 2:07 PM
Philippa's story

My mother and I both have rare diseases and have vastly different experiences in dealing with the health system.

Mar 9, 2021, 12:58 PM
Flynn's story

I went home and researched and came upon the Tatton Brown Rahman Syndrome group on Facebook - I knew instantly this is what Flynn has.

Nov 18, 2020, 1:39 PM
Carsen's story

If there had been a framework for his rare condition, the experience would have been very different.

Nov 3, 2020, 12:57 PM
Chris' story

I want to raise awareness in New Zealand as not many specialists have even heard of it.

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.