Rare Disease Day 2017

Press Release – NZ Organisation for Rare Disorders

The last day in February is fast approaching, and the New Zealand Organisation for Rare Disorders (NZORD) is once again gearing up to celebrate Rare Diseases Day 2017. This special day is dedicated to raising awareness about the many New Zealanders …Press Release

Rare Disease Day 2017

The last day in February is fast approaching, and the New Zealand Organisation for Rare Disorders (NZORD) is once again gearing up to celebrate Rare Diseases Day 2017. This special day is dedicated to raising awareness about the many New Zealanders and their families/whanau affected by a rare disorder, and living with the challenges that this brings daily.

Rare Disease Day takes place on the last day of February around the world and is an annual celebration and fundraiser for those Rare Gems in our community; and here in New Zealand we are lucky to be the first to kick off the celebrations worldwide.

If you have been in Wellington over the last two weeks you may have spotted the billboard on the corner of Taranaki and Vivian Streets. The billboard is all about Rare Disease Day and features ten-year-old Adam Tiedemann. Adam has a rare chromosomal disorder, 1q44 deletion along with a 5q34q35 duplication.

Adam is our poster child for Rare Disease Day 2017. This year NZORD advertised on social media for a poster child and Adam was selected from many applicants within the rare disorder community. Adam’s Mum Michelle shared this with us; “Adam for me is a ‘teacher’ of many things and I love that about him. I love his perspective on the world, the small things he engages in that most of us would normally walk by’.

The NZORD poster child search for Rare Disease Day will be an annual event, advertising around October every year.

There are over 7,000 known rare diseases worldwide, with an estimated 6- 8% 1 of people living in New Zealand affected by a rare disorder, a number collectively larger than diabetes. A large proportion of those rare disorders have genetic origins; in fact, these account for some 80% of the total according to estimates by Eurordis 2005. Due to the genetic and often hereditary nature of these rare disorders it makes sense that over 50% of those affected are children.

This is what Rare Disease Day is all about. Raising awareness about rare disorders is important as patients like Adam and their families who have received a diagnosis or are still awaiting one, find themselves embarking on a challenging journey that is by no means easy, and often isolating. Information, support, and facilitating networks and research is just one of the ways we can help a newly diagnosed patient and their family. This is what the New Zealand Organisation for Rare Disorders strives to do, revisiting our mission statement in 2016:

To support, assist and promote better health care and well-being for patients and their families/whanau living with a rare disorder in New Zealand.

According to NZORD’s Chief Executive Letitia O’Dwyer, “Rare Disease Day is an opportunity to bring attention to that 6-8% of the population who often struggle to be heard individually. It is a day to look at how we can improve the lives of those affected by a rare disorder, facilitate networks, support and connect health professionals and educate the general New Zealand public about rare disorders as a whole.

NZORD is hosting a cocktail evening in Wellington on Tuesday 28 February to celebrate Rare Disease Day. This event is being held at the Wellington Club, 88 The Terrace, Wellington. Tickets are $75 and fast selling out. If you would like to purchase a ticket, please email comms@nzord.org.nz.

To learn more about NZORD please visit nzord.org.nz and to find out more about rare disease day, please visit the website rarediseaseday.org.nz.

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