Newsletter 2017 #2

NZORD Newsletter - April 2017
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Letitia’s Greetings


Welcome to the NZORD newsletter for April.

It has been a busy two months at NZORD with Rare Disease Day taking place at the end of February and preparation for a conference in the US where I am one of the guest speakers.

Our SWAN NZ support group celebrated Undiagnosed Children’s Awareness Day on Saturday 18 March aligning ourselves with SWAN Australia who celebrates on this day also.

Thanks to everyone who came along to the cocktail evening, it was lovely to see you all there, your support is much appreciated.

NZORD is again selling the Entertainment™ Books and Entertainment™ Digital Memberships, if you would like to purchase one for 2017/2018, please see more details below.


Best wishes
Letitia

Rare Disease Day Cocktail Evening

NZORD hosted a cocktail evening at the Wellington Club on Tuesday 28 February 2017 to celebrate Rare Disease Day.

This year's guest speaker was Tessa Prebble. Tessa is a journalism teacher from Wellington, who lost her daughter, Eva, to complications of CHARGE Syndrome at 10 months old. She writes a blog called The One in a Million Baby and produces a podcast of the same name.  Tessa tells her story and Eva's through her blog, the One in a Million Baby podcast focuses on families living with special and medically fragile kids.

Tessa's speech was incredible, she spoke of her journey with her baby daughter Eva, it was honest, raw and inspiring all at the same time – thank you Tessa.

Here are some photos from the evening.









Rare Disease Day 2017

As another Rare Disease Day wraps up, and we prepare to review how this year went, it would be wonderful to hear from the rare disorders support groups as to what you find most helpful.

Currently we send posters out to all Rare Disorder Support Groups that are listed in the directory. We offer ribbons that can be purchased at cost and then on sold at events, this year we also introduced collection boxes. It would be useful to hear some feedback on these items, whether they are useful or not or if there are other suggestions that we could consider?

 

 

NZORD also hosts the Rare Disease Day website, how useful is this site in the lead up to Rare Disease Day www.rarediseaseday.org.nz?

We would be keen to hear about any events you held or participated in for Rare Disease Day.

To submit feedback to the NZORD team, please email comms@nzord.org.nz.

SWAN NZ

SWAN New Zealand celebrated Undiagnosed Children's Awareness Day (UCAD) on Saturday 18 March. Other countries celebrate this day in April but for us it is close to Anzac Day and organizing events can get tricky. We have aligned ourselves with SWAN Australia and celebrate with them.

Two of our SWAN mums in Auckland organised a picnic on One Tree Hill. Being a new group, it was a small gathering but a fantastic opportunity for some of our families to meet for the first time.

As the group grows, it is hoped that next year there will be gatherings in other parts of the country too.

If anyone is interested in organising a catch up with other SWAN NZ members, please email swannz@nzord.org.nz and we can arrange to put you in touch with other members who may be living close by.

A SWAN NZ Twitter account is now up and running, check it out @swannz_nz.

To visit the SWAN NZ Facebook page, head to www.facebook.com/SWANNZ/.

We would love some more patient stories and photos to add to the website, sharing your story can be a huge help to other people out there struggling without a diagnosis.


If you would like to join SWAN NZ, please visit the recently launched website www.swannz.org.nz and fill in the membership form. SWAN NZ is free to join and is welcoming new members.

Orphan Drug Congress - Washington D.C.

Our Chief Executive Letitia O'Dwyer has been invited to speak at the World Orphan Drug Congress being held in Washington D.C later this month. Her talk is titled:

'Changing the paradigm of access, recognition and collaboration in rare diseases in New Zealand'

To see more visit:

http://www.terrapinn.com/conference/world-orphan-drug-congress-usa/Conference-Day-Two-RDAW.stm#sthash.vG6QLwc7.dpuf

http://www.terrapinn.com/conference/world-orphan-drug-congress-usa/speaker-letitia-ODWYER.stm

NZORD website - what's new?

Vikki our fantastic Relationship Manager has been working hard to put together some helpful information. This has now been added to the NZORD website.

Under Living with a Rare Disease is a new section called Communicating with your GP.

Under Helpful Information, there is a new section called Applying for Pharmac Funding.

If you have a moment, check out these new pages www.nzord.org.nz. If you have any feedback, please do let the NZORD team know by emailing enquiries@nzord.org.nz.

Entertainment Books

NZORD is pleased to be fundraising with Entertainment™ again this year. Order your NEW 2017| 2018 Entertainment™ Books and Entertainment™ Digital Memberships from us today, and 20% of the proceeds contribute towards helping NZORD!

If you order before # April you will receive up to $150 worth of early bird offers, so what are you waiting for :)

Order your new Entertainment™ Book or Entertainment™ Digital Membership by clicking on the link below:

www.entertainmentbook.co.nz/orderbooks/921v787

Connect with NZORD via Facebook
Visit the NZORD Website






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New Zealand Organisation for Rare Disorders · PO Box 38-538 · Wellington Mail Centre · Petone, 5045 · New Zealand

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