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

 
Scoop Review Of Books: The Typewriter Factory

I finished reading Don’t Dream It’s Over not long after it came out last August. I even started writing a review, which took something of an ‘I’m sorry people, but it’s already over’ approach. I’ve been pretty negative about journalism as it’s practiced in the mainstream (or MSM, or corporate media or liberal media or whatever terminology you prefer) for quite some time (see for example Stop the Press), and I believe the current capitalist media model is destructive and can’t be reformed. More>>

Sheep Update: Solo World Shearing Record Broken In Southland

Southland shearer Leon Samuels today set a new World solo eight-hours strongwool ewe-shearing after a tally of 605 in a wool shed north of Gore. More>>

ALSO:

Howard Davis Review: Dick Frizzell At The Solander Gallery

One of the most influential and celebrated contemporary Pop artists working in New Zealand, Dick Frizzell is mostly known for his appropriation of kitsch Kiwiana icons, which he often incorporates into cartoon-like paintings and lithographs. Not content with adhering to one particular style, he likes to adopt consciously unfashionable styles of painting, in a manner reminiscent of Roy Lichtenstein. More>>

Old Music: Pop Icon Adam Ant Announces NZ Tour

Following his recent sold out North American and UK tours, Adam Ant is celebrating the 35th anniversary of the release of his landmark KINGS OF THE WILD FRONTIER album with a newly-remastered reissue (Sony Legacy) and Australasian tour. More>>

Scoop Review Of Books:
Looking Back

Writing a memoir that appeals to a broad readership is a difficult undertaking. As an experienced communicator, Lloyd Geering keeps the reader’s interest alive through ten chapters (or portholes) giving views of different aspects of his life in 20th-century New Zealand. More>>

Scoop Review Of Books: Purple (and Violet) Prose

This is the second recent conjoint publication by Reeve and Stapp; all to do with esoteric, arcane and obscure vocabulary – sesquipedalian, anyone – and so much more besides. Before I write further, I must stress that the book is an equal partnership between words and images and that one cannot thrive without the other. More>>

Get More From Scoop

 
 

LATEST HEADLINES

 
 
 
 
Health
Search Scoop  
 
 
Powered by Vodafone
NZ independent news