NZORD Newsletter 2015 # 1 – 5 February 2015

NZORD - the New Zealand Organisation for Rare Disorders

Hello everyone, 

In this special Rare Disease Day edition:1 – Happy New Year from NZORD
2 – Rare Disease Day Movie Evenings3 – Rare Disease Day posters and pins4 – Register your Rare Disease Day event

1 – Happy New Year from NZORDThe NZORD team would like to wish everyone all the best for 2015.  The team are back on deck in the Wellington office preparing for Rare Disease Day celebrations and the year ahead. Are your plans in place? Check our Rare Disease Day website for ideas to raise awareness and raise funds for rare diseases. Past years have seen multiple events around the country organises by families and small groups. It’s an opportunity to get attention to the rare disease you deal with, no matter how few of you there are.

2 – Rare Disease Day Movie EveningsWe’re pleased to confirm that we will be holding two movie events in February:Thursday 26 February, 6.30pm – Lighthouse Cuba Theatre, Wellington.Thursday 26 February, 8.30pm – Capitol Cinema, Auckland.These will be fun evenings. We have managed to secure an opening night screening of the Second Best Exotic Marigold Hotel movie in both Auckland and Wellington. This movie looks to be as entertaining as the first, and should be on everyone’s “must see” list. Be in first at our opening night screenings. There will be raffle tickets on sale and spot prizes to be won.Tickets are $20 each. Email Lyndal Bremer at to secure your seat, and do so soon, so tickets can be mailed to you in time.

3 – Rare Disease Day posters and pinsThis year’s poster has been finalised.  We are extremely lucky to have three year old Romy as our poster girl for 2015.  Romy features in the Super Power Baby Project book produced by Sam and Rachel Callendar which was released this year.  Posters are being distributed and more can be downloaded from the Rare Disease Day website.In addition this year we have some beautiful pins that can be ordered to assist with raising money at your Rare Disease Day event.  The pins are featured on the Rare Disease Day Facebook page and can be purchased from us here at NZORD, the cost is $30 for 50 pins which works out at 60 cents each.  These can then be on sold, our recommended price range is $2 - $3. If you would like to order some pins please let us know by emailing Lyndal Bremer at by the 10 February and these will be sent out with any Rare Disease Day posters you order.

4 – Register your Rare Disease Day eventNZORD has been receiving numerous enquiries about what Rare Disease Day events will be taking place around the country. Apart from our organised movie evenings, we leave it up to families and groups to do their own thing in the schools, clubs, workplaces and communities. That always generates a lot more activity and fundraising than we could possibly organise. If you are planning an event please register it on the Rare Disease Day website, this will ensure we all know what’s happening. Remember there are spot prizes for those who do register their events.Best wishes with the events and activities you organise for Rare Disease Day 2015.

Edited by Lyndal Bremer and John Forman