Newsletter 2018 #1

NZORD Newsletter - February 2018
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Greetings from the NZORD Chief Executive

Happy New Year and welcome to the first NZORD Newsletter Update for 2018.

Our team is very busy focusing on preparations for our Rare Disease Day symposium "New Horizons" taking place in Auckland on 22 February. The aim is to create awareness about rare diseases, and the people and their families/whānau who are living with a rare disease, while also providing an opportunity for you all to build networks and relationships.

We are pleased to announce we have secured two more key speakers: Dr Callum Wilson, a metabolic paediatrician at Starship Hospital; and Dr Andrew Munkacsi, senior lecturer and research scientist at Victoria University of Wellington.  There are a limited number of seats left so If you would like to attend our symposium, please urgently register via our website!

In other highlights, read about our poster child Gabrielle’s story, the Rare Disease Day Raffle, our hunt for two new board members to help lead NZORD and our quest to update your contact details so we can communicate more effectively with our patients, support groups and valued stakeholders.

I sincerely look forward to meeting with as many of you as possible at our New Horizons Symposium on 22 February.


Ngā mihi,
Dr Collette Bromhead

Latest updates from our website

Board of Trustees vacancies

NZORD is seeking expressions of interest to fill two vacancies on its Board – one for the role of Chair, and the other for a Board member with both a legal background and an active interest in advocating for the best interests of people living with rare disorders.

Please contact chris.higgins@nzord.org.nz for more information.

Rare Disease Day 2018

Our Rare Disease Day poster featuring seven-year-old Gabrielle from Nelson is now available to download, or contact comms@nzord.org.nz for a copy. Read Gabrielle’s story at rarediseaseday.org.nz

Gabrielle will also feature on a giant billboard on the corner of Taranaki and Vivian Streets in Wellington.
 

Every ticket you buy enables NZORD to support, assist and promote better health care and wellbeing for patients and their families living with a rare disorder in New Zealand.

Be in to win one of two very special dining experiences:
1ST PRIZE - Degustation dinner for two including wine matching at The Sugar Club restaurant atop Auckland’s Sky Tower (value $550)
2ND PRIZE - Three course lunch for four at Waiheke Island’s Tantalus Vineyard (value $400)

Tickets cost $10 each. Buy tickets and support NZORD

Rare Disease Day Symposium 2018

Rare Disease Day Symposium 2018
There are still some tickets available for our one-day symposium on 22 February 2018 at the Ernest & Marion Davis Lecture Hall, Auckland City Hospital

Register online

Support groups – contact details


Remember to get in touch with NZORD if your contact details have changed. We are currently doing a stocktake of all our support group contacts, and have found some details that are out of date. When patients reach out to us it’s vital that we can easily connect them with the right support.
 
Email to change your details.


 
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New Zealand Organisation for Rare Disorders · PO Box 9514 · Marion Square · Wellington, 6141 · New Zealand

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