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.

Jul 20, 2022, 12:07 AM
Ellie's story

I am Ellie, I have IPH (Idiopathic Pumlonary Hemosiderosis). IPH is the unknown bleeding of the lungs.

Apr 4, 2022, 11:04 PM
Ava's story

Deep down I always knew she was a little different, she didn’t make a sound when she was born and she cried for the first time at 3 months old.

Jun 29, 2021, 9:13 AM
Prerna's story

I read somewhere that hope is a passion for what is possible and truly I live by it.

Jun 15, 2021, 9:39 AM
Susannah's story

Having some way to record diagnosed cases would give solid data around how many New Zealanders are dealing with this terrible disorder.

Apr 13, 2021, 4:25 PM
Sam's story

Being different isn’t a bad thing - heck, maybe it’s my superpower!

Apr 12, 2021, 4:43 PM
Stephen's story

I have MSA-C, a rare neurological condition that came on in my early 60s, primarily caused by the shrinking of my cerebellum.

Apr 5, 2021, 2:24 PM
Elenna's story

My family and friends all signed the petition to make our healthcare system Fair for Rare. I think I got about 60-80 signatures, Mum was proud.

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.