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 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


© Scoop Media

Culture Headlines | Health Headlines | Education Headlines


Scoop Review Of Books: Worldly And Unworldly

"Being Magdalene" by Fleur Beale The situations shown in this youth novel are shocking, scary, and very moving as we experience Magdalene’s struggle to be a perfect girl as defined by the cruel and unreasonable leader of “The Children of the Faith”, as she moves reluctantly into young womanhood. More>>

Whistle Stop: Netball NZ To Implement New INF Rules

Netball New Zealand (NNZ) will implement the new Official Rules of Netball, as set down by the International Netball Federation (INF), from January 1, 2016. Key changes include the elimination of whistle following a goal, amendments to injury time and changes to setting a penalty. More>>


Scoop Review Of Books: Waiata Aroha

Vaughan Rapatahana on Chappy by Patricia Grace: With this eminently readable novel Patricia Grace returns to the full-length fiction stage after a hiatus of ten years. More>>

'Ithaca' At Q Theatre: Introducing NZ's World Class Cirque Troupe

NZ’s very own cirque troupe is set to become a household name with the premier of its adaptation of Homer’s Odyssey having secured a key season in Auckland. More>>

Music Awards: The Tuis Are Broody This Year

Topping off a sensationally eventful year both at home and internationally, Nelson born brother-sister duo Broods has taken home four Tuis from this year’s 50th annual Vodafone New Zealand Music Awards. More>>


Sport: Richie McCaw Retires From Rugby

Richie McCaw has today confirmed he is hanging up his boots and retiring from professional rugby. The 34-year-old All Blacks captain and most capped All Black of all time has drawn the curtain on his stunning international career which started in Dublin 14 years ago, almost to the day, and ended in London last month when he hoisted the Webb Ellis Cup aloft for the second time. More>>


John McBeth: On Jonah Lomu

For many New Zealanders, the enormity of Jonah Lomu's reputation will have come as a surprise... His deeds were watched and enthused over by movie stars and musicians, politicians and superstars from other codes. He reached into the lives and homes of millions and mixed with famous people most New Zealanders would only have read about. More>>


Get More From Scoop



Search Scoop  
Powered by Vodafone
NZ independent news