Newsletter 2016 #1
New Year Greetings
Welcome to the first NZORD newsletter for 2016.
The NZORD team hope that everyone enjoyed safe and happy holidays over the festive break.
It has been a busy start to the year for the NZORD team. Preparations are well underway for Rare Disease Day 2016 which is now only 4 weeks away. Most of this newsletter is dedicated to information on Rare Disease Day. If you do have any questions, please email us at RDD@nzord.org.nz.
Having joined NZORD in August 2015, I haven't had a chance to meet as many people as I would like. Rare Disease Day seemed like a good opportunity to change that. I will be travelling to several main centres from 1 to 3 March 2016. If you would like to pop in and say hello and catch up over refreshments it would be great to see you. Please see the below graphic for dates and venues.
We hope to see many of you at the NZORD Cocktail Evening on the 29th of February in Wellington.
NZORD: Meeting the Community
Rare Disease Day Cocktail Evening
NZORD is hosting a cocktail evening on Monday 29th February to celebrate Rare Disease Day. This event will be held at the Wellington Club, 85 The Terrace, Wellington.
Our former Chair Linda Clark will be the MC for the evening and we are thrilled to have Rachel Callander from the Super Power Baby Project as our guest speaker. To learn more about the Super Power Baby Project visit the website here.
There will be a live auction, beverages and delicious food to keep you entertained throughout the evening.
To purchase a ticket please contact Lyndal at email@example.com.
We would love to see you there!
Rare Disease Day poster 2016
Many of you will have received the RDD poster for 2016. This year's poster features Jesse Petersen and her 6 year old daughter Vayla.
Vayla has Cri Du Chat Syndrome and according to Jesse "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".
Jesse and Vayla also feature on NZORD's website.
Thanks to Ben Chapman our Webmaster who designed this year's poster for us.
If you would like us to send you a poster, please email Lyndal at RDD@nzord.org.nz.
Rare Disease Day pins
NZORD will again be providing the Rare Disease Day pins to assist with raising money at your Rare Disease Day 2016 event. The pins can be purchased from us here at NZORD, the cost is $30 for 50 pins. These can then be on sold, our recommended price is $2 to $3.
If you would like to order some pins, please email Lyndal at RDD@nzord.org.nz
University of Auckland Study
Researchers at the University of Auckland are leading a study to uncover DNA changes responsible for rare neurodevelopmental disorders that have not been explained through standard tests. They plan to apply revolutionary new DNA sequencing technologies to obtain a genetic diagnosis for participating families and demonstrate the benefits of routine clinical use of this technology in New Zealand.
They are currently looking for families who have a child (or children) with an undiagnosed neurodevelopmental condition with an accompanying intellectual disability. Participants need to provide a DNA sample (saliva or blood). This study is approved by the Northern B Health and Disability Ethics Committee, reference 12/NTB/59 and is part of a larger project investigating the genetic underpinnings of neurodevelopmental disorders in New Zealand. More information about the wider research programme can be found at: www.mindsforminds.org.nz, or by way of the contact below.
If you are interested in participating in this research project please contact the research team directly – Whitney Whitford at: firstname.lastname@example.org
Nominations open for national Respiratory Achievers Awards
Is there someone you admire who lives with a respiratory condition? Someone who lives life to the fullest and doesn't let their condition get in the way of their goals?
Nominate them for the national Respiratory Achievers Awards run by the Asthma and Respiratory Foundation. The Awards take place every two years to raise awareness and to celebrate and honour those living with a respiratory condition.