NZORD "don't donate to us, donate to them instead"

Rare Disease charity says "don't donate to us, donate to them instead"

NZORD - the New Zealand Organisation for Rare Disorders

In a novel twist to charitable fundraising, NZORD is not seeking funds for its own organisation. Instead NZORD is promoting New Zealand Rare Disease Day on Monday 28 February 2011 as an opportunity for the public to donate to one of more than 140 rare disease support groups.

NZORD’s Rare Disease Day website www.rarediseaseday.org.nz encourages support groups and their members to get involved in fundraisers for their own rare disease charity, and provides an opportunity to raise funds for a particular rare disease even if a support group does not yet exist for it.

NZORD executive director, John Forman, says the day is set up to raise awareness of rare diseases as a significant issue affecting about 8% of the whole population, and the fundraising side of the day takes the theme “Jeans for Genes”. Forman says that NZORD wants to provide an opportunity for small groups to raise funds even though they lack the resources and outreach of larger charities.

“We have provided flyers, promotional material, and a “how to” guide on the website so rare disease groups can easily set up fundraisers in workplaces, schools or clubs. Wearing jeans as part of a mufti-day is the central theme, designed for simplicity and easy participation, but other features can be promoted by those who wish to be more creative in their fundraising efforts”, says Forman.

Small groups that are not incorporated and don’t have their own bank accounts can also be supported through NZ Rare Disease Day and Jeans for Genes fundraisers. NZORD has set up a special rare disease donations account at the ANZ Bank 010533-0042051-02. Online donations can be made to that account for any rare disease, simply by putting the name of the rare disease into the online reference. NZORD will hold the funds in trust and ensure they go to appropriate charitable purposes for that disorder.

A list of support groups can be found at www.nzord.org.nz/support_groups

Rare disease day is an international project that began in Europe on 29 February 2008. It was originally intended to be celebrated just in leap years, but momentum and enthusiasm among rare disease support groups has meant the day is now an annual event, spreading rapidly around the globe. February 2010 was the first New Zealand event for rare disease day, with a celebration at the Vodafone Warriors carnival week.

ENDS

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