News Video | Policy | GPs | Hospitals | Medical | Mental Health | Welfare | Search

 


It’s All About Them – Not Us

NZORD - the New Zealand Organisation for Rare Disorders
Press release

It’s All About Them – Not Us.

Supporting the Rare Gems™ in our community, NZORD, the NZ Organisation for Rare Disorders has gone in to bat for small groups supporting those with very rare conditions, rather than concentrate on its own coffers, for Rare Disease Day on Thursday 28th February. The Rare Gems™ theme recognises the exceptional occurrence of so many different rare diseases, from one in many thousands to one in a million in some cases.

NZORD is promoting Rare Disease Day as an opportunity for small support groups to raise awareness and fundraise for their own organisations, using resources provided by NZORD through its dedicated website www.rarediseaseday.org.nz. Rare diseases may be individually rare but as there are about 7000 of them they are collectively common, affecting about 8% of the whole population.

“We have put up our own funds to develop the website, design the posters and do the publicity, and we are channelling efforts around this day to help small groups fundraise through events organised by patients and families in schools, workplaces and other community settings,” says NZORD executive director John Forman. The website has posters to download, ideas for events, “how to” guides and more, all designed to make it simple for the smallest group or individual patients or families to get involved.

Forman says their main aim is to assist rare disease groups to do their own thing, and even extends to NZORD offering to receive any funds raised and hold them in trust on behalf of unincorporated small groups, to help ensure donor confidence in the end use of funds raised.

“An important part of our mission is to help rare disease support groups operate effectively,” says Forman. “Rare Disease Day is the perfect opportunity for us to give a leg-up to groups who often struggle for attention to their disorder in the health system, and who certainly have a tough time raising funds for their activities.”

However, anyone who wishes to support the rare disease cause but doesn’t have a particular condition to identify with, is welcome to donate to NZORD’s dedicated research activities, and details of this are on the Rare Disease Day website.

Individually rare but collectively common – Support the Rare Gems™ in our community on Thursday 28 February 2013.

New Zealand Rare Disease Day www.rarediseaseday.org.nz
NZORD www.nzord.org.nz

ENDS

© Scoop Media

 
 
 
 
 
Culture Headlines | Health Headlines | Education Headlines

 

NZ on Air: More Funding For TV Captions To Increase Access

More funding for TV captions to increase access NZ On Air has increased funding to provide more captions and audio description on television programmes for the hearing and sight impaired. More>>

Music: So Laid Back Country China Album Release

On Friday night, So Laid Back Country China held a gig at Meow for the release of their new album With Knees of Honey in Goodbye Canyon. I briefly spoke with Harriet lead vocals, keyboard) and Michael (lead vocals, guitar) before the gig More>>

Art: Wellington Region Celebrates Matariki

Eight Wellington museums and galleries have joined forces to present a major programme of exhibitions and events to celebrate Matariki 2015, the Māori New Year. The Wellington Matariki Festival will host more than 60 free events and activities between Saturday ... More>>

Wellington: TEDxWellingtonWomen Speakers Unveiled

The lineup is announced today for the highly anticipated upcoming event TEDxWellingtonWomen. Speakers include local women and men who have lived extraordinary lives and have ideas worth spreading. More>>

Culture: RNZB Showcases NZ Artists With Two World Premieres

The Royal New Zealand Ballet’s mixed bill Salute - Remembering WW1 which opens on 22 May will showcase the talents of New Zealand artists working at the top of their field. More>>


Books: Witi Ihimaera To Address ‘State Of NZ Literature’at Festival

6 May 2015 MEDIA RELEASE Witi Ihimaera to Address ‘State of NZ Literature’ at Dunedin Writers and Readers Festival The New Zealand Book Council has chosen the 2015 Dunedin Writers and Readers Festival as the stage for its annual address, which ... More>>

Culture: Historic Māori Portraits Travel To The Czech Republic

Image credit: Gottfried Lindauer, Wahanui Reihana Te Huatare, oil on canvas, Auckland Art Gallery Toi o Tāmaki, gift of Mr H E Partridge, 1915 More>>

Art: Something Felt, Something Shared - Enjoy

Gabrielle Amodeo, Ruby Joy Eade, Clare McLean, Kalya Ward Curated by Emma Ng May 7 – 30, 2015 Opening: Wednesday May 6, 5.30pm Strange frequencies are channelled through personal narratives and poetic placeholders in Something felt, something ... More>>

Culture: Pukeahu Park ANZAC Day Commemoration 2015

Pukeahu Park ANZAC Day Commemoration 2015 Images from New Zealand Defence Force Click for big version A bugler plays The Last Post Click for big version A View from the top of the Carillion Click for big version Faces old and young Click for big ... More>>

Television: MediaWorks Announces Dancing With The Stars Hosts

MediaWorks and BBC Worldwide ANZ are delighted to announce host Dominic Bowden alongside co-host Sharyn Casey for the hit series Dancing with the Stars. More>>

Get More From Scoop

 
 

LATEST HEADLINES

 
 
 
 
Health
Search Scoop  
 
 
Powered by Vodafone
NZ independent news