Quake spurs charity to hold back on rare disease day

Hello everyone,

It has been a dilemma deciding what to do about our planned final publicity push to promote NZ Rare Disease Day on Monday 28 February. NZORD feels that in the light of the scale of Christchurch’s tragic earthquake, we are reluctant to engage in further broad publicity that puts rare disease issues forward for fundraising in this particular week.

However we are aware that a number of rare disease support groups are geared up to go with the fundraisers next Monday. We will leave it up to each group to use their own judgement, in consultation with the workplaces and schools they are working with for their event. If they are still keen, we encourage full steam ahead with the fundraising events.

Some schools or workplaces might choose to do the rare disease fundraiser on another date, so they can focus their efforts right now on the Christchurch tragedy. That’s perfectly acceptable, as 28 February simply provides a focus for rare disease fundraisers, rather than mandates a date for it. Flexibility as to the actual date of the fundraiser is fine and already some later dates have been planned.

But one important message, please do not use the slogan Jeans for Genes in any further promotion. Believe it or not, an Australian group has claimed a New Zealand trademark on the slogan, and though they have never used it here, and might have difficulty in ever doing so, NZORD feels it is better to avoid any conflict and drop the slogan. We have removed it from our website and posted amended brochures on the website for downloading. We encourage groups to substitute phrases like denim day or mufti day when describing the theme of the fundraiser.

Last year the Pacific Tsunami swamped planned publicity around Rare Disease Day. This year it is the Christchurch quake. Hopefully there will be no third time unlucky next year.

Regards, john

John Forman
Executive Director, NZORD

ENDS

© Scoop Media