In previous years, The New Zealand Organisation for Rare Disorders (NZORD) has selected a Poster Child for Rare Disease Day. In 2019 we want to highlight the wider range of personal experiences by featuring the stories of more than one person with a rare disease.
We are calling for everyone, of any age, to share their story. Up to four stories will be selected to feature on the Rare Disease Day website and associated materials.
Rare Disease Day takes place around the world on 28 February. We are currently exploring the best options for raising awareness of rare disorders during February 2019, including posters, web banners and media.
There are many benefits to being one of the Rare Disease Day Stories:
- You may feature on a poster/web banner that will be displayed around New Zealand.
- It raises awareness for your/your child’s rare disorder and the support group you are involved in.
- It creates publicity around Rare Disease Day, for the rare disorder and for the rare disease community.
If you are interested in applying for your child or yourself to become one of the RDD 2019 Stories and you are happy with the terms and conditions set out below, please go this this link www.nzord.org.nz/stories-project/share-your-story
Terms and conditions
- You or your child have a rare disorder and live in New Zealand.
- If you have a recent, high-resolution photo of you or your child that we could use, that would be wonderful. If not, NZORD may arrange for a photographer to take some photos for the purposes of RDD.
- The photographs will be used on the Rare Disease Day website and for any other NZORD materials produced around Rare Disease Day 2019. For example, Powerpoint presentations, posters, web banners, newsletters, social media posts, NZORD website and reports.
- There will be no monetary payment made to the patients and their families taking part in this project.
- All expressions of interest to be in by 12 October 2018.
- NZORD will choose the Poster Stories by 31 October 2018 and all applicants will be notified. NZORD’s decision will be final.