Get involved in Rare Disease Day and help raise awareness and funds for support groups and research throughout the country.
People with rare diseases in New Zealand are few and far between, so we like to think of them as Rare Gems.
By working together, we know we have a greater chance of our Rare Gems being seen and heard.
NZORD movie night
Location: Lighthouse Cuba Street, Wellington
Date: 24 February 2015
NZORD is holding a movie night on Tuesday 24 February to raise awareness for Rare Disease Day. If anyone would like to get in early and book some tickets please email: firstname.lastname@example.org.
Events from 2014
‘Sparkle and Shine’ at Lyall Bay School
People with rare diseases in New Zealand are few and far between, like “Rare Gems”. Lyall Bay School is getting involved in Rare Disease Day as we have people with rare diseases in our school community. Children researched rare gems and dressed in matching colours. Other children came along with sparkling and shining accessories including wigs and face paint. The staff also got involved and a lot of tinsel was seen waving in the Wellington wind. We raised over $420 for NZORD by making it a gold coin donation and also raised awareness at the same time.
Yellow Balloons for Liver Disease
KIDS Foundation families, medical staff and supporters met in Auckland Domain on Friday 28th February to mark Rare Disease Day. A talented St Johns yellow eyed penguin called Primo - helped us release yellow balloons to raise awareness of the early warning signs of paediatric liver disease.
A fun way of communicating a very important message - painting the sky yellow to mark the day !
The balloons were symbolic of our brave liver children - their courage and tenacity.
As we watched the balloons - we remembered fondly, our precious children sadly lost to liver disease, gave thanks for those that have overcome the disease, and gratefully acknowledged the precious gift of life offered by liver donors.
Thanks to all who participated!
It is wonderful to see this message being broadcast Nationally with KIDS Foundation families sharing their experiences:
- Challenging Start to Life (The Northern Advocate)
- Beware Yellow: that baby could have serious liver disease (Scoop)
- Brave Mere's fight carries message (The New Zealand Herald)
Public Lectures in Christchurch and Dunedin
Public lectures were held in Christchurch and Dunedin featuring researchers from the University of Otago and Genetics Otago.
The Dunedin lecture was held at Toitu Museum and featured talks by
- Professor Stephen Robinson
- Dr Stephanie Hughes
- Dr Julia Horsfield
The Christchurch lecture was held at University of Otago Christchurch and featured talks by
- Professor Martin Kennedy
- John Forman
- Caroline Wagteveld McKenzie
‘Glitter for the Gems’ mufti day at Mairehau Primary School
Mairehau Primary School held a ‘Glitter for the Gems’ mufti day on Rare Disease Day.
Some kids wore glittery/sparkly clothes & hair. It was a gold coin donation and $358 was raised for rare disease research.