How to get involved
A day to celebrate
Rare Disease Day is our chance to raise funds for the dedicated support groups who usually go unnoticed in our communities. By working together to raise awareness, we know we have a better chance of people hearing and seeing our Rare Gems.
Organise or take part in a Rare Disease Day event, and you’ll be contributing to support groups that help improve the lives of people with rare diseases throughout New Zealand.
The objectives for Rare Disease Day are to:
- Raise awareness among the general public and decision makers about rare diseases and their impact on patients’ and families’ lives.
- Raise funds for your favourite rare disease support group.
- Have some fun while you do it!
Organising your Rare Disease Day event
Eight easy steps to create a successful event:
Decide what you want to do
- Identify the group you are going to support. Ideally it will be one that you or a friend or colleague have some involvement with, or you can select one from the support groups directory on the NZORD website.
- Talk to the principal at your local school, your manager or friends and family and decide what kind of fundraiser you would like to hold. Think about what types of events your community are likely to support. Here are some fundraising ideas to get you started:
- Coin trail
- Bake sale
- Sausage sizzle
- School mufti day
- Organise a
- Gala evening
- Movie evening
- Pub quiz
- Sell Cadbury chocolate
- Seek sponsors and take part in a fun run/walk/swim
Promote your event
- Download and print this year’s poster from the support materials page. Make sure you pin them up in prominent places – like school and work noticeboards. You could also share information about your event via local newsletters, community emails or radio stations. And don’t forget to share your event here – there are spot prizes up for grabs for those that do.
- Recruit people to take part in the event. Ask them to commit via Facebook, via email, or by signing up at a central point. If you’re using Facebook to raise awareness, make sure you join the New Zealand Rare Disease Day group so that we can keep you in the loop on what’s happening throughout the country to support Rare Disease Day. You can also follow us on Twitter.
- Make sure a system is in place for capturing the donations and recruiting a second person to count, check and verify the total.
- Notify the support group of the amount your event has raised and tell them how it has been sent to them – e.g. bank deposit, online payment, cheque etc., or send the funds to NZORD, tagged for your chosen group – see the Making a donation section below. Depositing the funds through the school office or the workplace accountant is another good way of ensuring confidence in the fundraiser.
- Report the total back to all who took part – you might like to do this via the same methods that you advertised your event.
- Send a message of thanks to all those who took part in the event, and include a receipt for tax purposes for all donations of $5 or more where this has been requested by the donor.
Some support groups are not incorporated and may not have a bank account.
You can still support them with confidence by sending your donation to the New Zealand Organisation of Rare Disorders (NZORD). NZORD will hold the funds in trust and ensure they are tagged to a particular rare disease or support group as appropriate.
For more information, see the Making a donation section.
Making a donation
There are several ways to support Rare Disease Day:
- You can donate directly to the rare disease support group of your choice. You can choose a group from the support group directory pages on the NZORD website and contact them to arrange a cheque or an online payment.
- Some support groups are not incorporated and may not have a bank account. You can still support them with confidence by sending your donation to NZORD. NZORD will hold the funds in trust and ensure they are tagged to a particular rare disease or support group as appropriate.
- You can contribute to furthering rare disease research in New Zealand by donating to the online campaign to raise funds for the New Zealand Institute for Rare Disease Research. The Institute is wholly owned by NZORD and has been set up to further rare disease research in New Zealand.
01 0533 0042051 02
Please show the rare disease name or support group that you want to support in the reference field.
You can contribute to our campaign to increase rare disease research in New Zealand by contributing to the New Zealand Institute of Rare Disease Research via our Givealittle page.
Please contact firstname.lastname@example.org if you would like to discuss an alternative way of donating.