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Rare Disease Day 2016

Rare Disease Day 2016

The last day in February is fast approaching, and the New Zealand Organisation for Rare Disorders (NZORD) is gearing up to celebrate Rare Diseases Day bigger, and better than ever. 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 on a daily basis.

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.

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 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.

Which is why this year’s Rare Disease Day NZ poster features Vayla and her Mum Jesse. Vayla is 7 years old and has 5p- syndrome, or cri du chat – “cry of the cat”. Jesse has this to say about her little girl, “Vayla is just the happiest kid and has enriched our lives and exposed us to a world we would not have had the pleasure of knowing before”.

This is what it is all about. Raising awareness about rare disorders is important as patients like Vayla and their families who have received a diagnosis or are still awaiting one, find themselves embarking on a journey that is by no means easy and can be 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.

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; and this year it is even more special with it falling on leap day”.

NZORD is hosting a cocktail evening in Wellington on Monday 29 February to celebrate Rare Disease Day. This event is being held at the Wellington Club, 85 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.

Kind regards

Letitia O’Dwyer
Chief Executive
NZ Organisation for Rare Disorders
www.nzord.org.nz

Ref 1. Rare Diseases: Understanding This Public health Priority. European Organisation for Rare Diseases (EURORDIS). November 2005. Retrieved 16 May 2009.

Ref 2. European Organisation for Rare Diseases. Rare diseases: understanding this public health priority. http://www.eurordis.org/IMG/pdf/princeps_doc ument-EN.pdf (accessed on 21/Mar/2013)

ENDS

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