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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

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