Organising your Rare Disease Day event

Eight easy steps to create a successful event:

Decide what you want to do

  1. 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.
  2. 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. You could run anything from a ‘rare gems’ auction or a pub quiz to a bake sale or sausage sizzle. Think about what types of events your community are likely to support.

Promote your event

  1. 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.
  2. 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 ‘Like’ the New Zealand Organisation for Rare Disorders page so that we can keep you in the loop on what’s happening throughout the country to support Rare Disease Day. You can also join the New Zealand Rare Disease Day group on Facebook.

Collect donations

  1. Make sure a system is in place for capturing the donations and recruiting a second person to count, check and verify the total.
  2. 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 page. Depositing the funds through the school office or the workplace accountant is another good way of ensuring confidence in the fundraiser.
  3. Report the total back to all who took part – you might like to do this via the same methods that you advertised your event. 
  4. 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, visit our Making a donation page.