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

 
Gordon Campbell: On Chuck Berry (And James Comey, And Bill English)

Back when many people were still treating rock’n’roll as a passing fad – was calypso going to be the new thing? – Chuck Berry knew that it had changed popular music forever. What is even more astonishing is that this 30-ish black r&b musician from a middle class family in St Louis could manage to recreate the world of white teenagers, at a time when the very notion of a “teenager” had just been invented. More>>

Howard Davis Review:
The Baroque Fusion Of L'arpeggiata

Named after a toccata by German composer Girolamo Kapsberger, L'Arpeggiata produces its unmistakable sonority mainly from the resonance of plucked strings, creating a tightly-woven acoustic texture that is both idiosyncratic and immediately identifiable. Director Christina Pluhar engenders this distinctive tonality associated with the ensemble she founded in 2000 by inviting musicians and vocalists from around the world to collaborate on specific projects illuminated by her musicological research. More>>

African Masks And Sculpture: Attic Discovery On Display At Expressions Whirinaki

Ranging from masks studded with nails and shards of glass to statues laden with magical metal, the works are from ethnic groups in nine countries ranging from Ivory Coast to the Democratic Republic of the Congo. More>>

Scoop Review Of Books: We’re All Lab Rats

A couple of years ago, there were reports that Silicon Valley executives were sending their children to tech-free schools. It was a story that dripped of irony: geeks in the heart of techno-utopia rejecting their ideology when it came to their own kids. But the story didn’t catch on, and an awkward question lingered. Why were the engineers of the future desperate to part their gadgets from their children? More>>

  • CensusAtSchool - Most kids have no screen-time limits
  • Netsafe - Half of NZ high school students unsupervised online

  • Obituary: Andrew Little Remembers Murray Ball

    “Murray mined a rich vein of New Zealand popular culture and exported it to the world. Wal and Dog and all the other Kiwi characters he crafted through Footrot Flats were hugely popular here and in Australia, Europe and North America." More>>

    ALSO:

    Organised Choas: NZ Fringe Festival 2017 Awards

    Three more weeks of organised chaos have come to an end with the Wellington NZ Fringe Arts Festival Awards Ceremony as a chance to celebrate all our Fringe artists for their talent, ingenuity, and chutzpah! More>>

    ALSO:

    Wellington.Scoop: Wellington Writer Wins $US165,000 Literature Prize

    Victoria University of Wellington staff member and alumna Ashleigh Young has won a prestigious Windham-Campbell Literature Prize worth USD$165,000 for her book of essays Can You Tolerate This? More>>

    ALSO:

    Scoop Review Of Books: Excerpt - Ice Bear: The Cultural History Of An Arctic Icon

    “During the last decade the image of the polar bear has moved in the public imagination from being an icon of strength, independence and survival in one of the most climatically extreme of world environments, to that of fragility, vulnerability and more generally of a global environmental crisis.” More>>

    Get More From Scoop

     
     

    LATEST HEADLINES

     
     
     
     
    Health
    Search Scoop  
     
     
    Powered by Vodafone
    NZ independent news