Newsletter 2016 #6

Letitia’s Greetings

Welcome to the NZORD newsletter for December 2016.

Thanks to everyone who supported our movie evening in October, it was lovely to see lots of people there.

With Rare Disease Day 2017 now less than three months away, planning is well underway, the team have been busy, with the current focus being the Rare Disease Day poster and billboard and the Rare Disease Day event.

The Annual Report is ready for distribution, if you would like a copy, please do get in touch and let us know.

It has been a busy year for the NZORD team, I am very proud of all that we have achieved and the team are ready for a well-earned break over Christmas.

The NZORD office will close Wednesday 21 December and will reopen again Monday 9 January. I'd like to wish everyone a wonderful festive season, safe travels and we look forward to a fabulous 2017.

Best wishes
Letitia

Letitia O'Dwyer

Rare Disease Day Cocktail Evening - SAVE THE DATE

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

NZORD are currently looking for donated items or services that can be auctioned on the night. If you would like to donate something to this wonderful cause, please do let us know.

Details are being finalised at present, in the interim if you would like us to save you a ticket, please email lyndal.bremer@nzord.org.nz.

Please SAVE THE DATE, more details to follow!

Rare Disease Day 2017

As well as the cocktail evening for RDD 2017, there are many other elements which are keeping the NZORD team busy.

The poster for RDD 2017 is almost complete, it features Adam Tiedemann who we introduced in our last newsletter. Adam is ten years old and has a rare chromosomal disorder, 1q44 deletion along with a 5q34q35 duplication. Here is a sneak preview of the poster.

New Zealand Rare Disease Day 2016 poster preview 

NZORD is lucky enough this year to have access to a billboard in central Wellington, the billboard is booked from 6 February to 5 March and is located on the corner of Taranaki and Vivian Street, right above our new offices. The billboard is currently being designed. We would like to thank Yvonne from the Production Shed for allowing us to promote Rare Disease Day on the billboard.

NZORD will again be providing the Rare Disease Day pins to assist with raising money at your RDD 2017 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 RDD@nzord.org.nz.

Rare Disease Day ribbons 

The Rare Disease Day website is updated and NZORD is keen to have as many events registered as possible for RDD 2017. Head along to rarediseaseday.org.nz and register your event, it's a great way to publicise what you have planned.

Te Reo Translation on NZORD Website

NZORD is currently having some areas of the website translated into Te Reo Māori. Earlier on this year it was decided that the NZORD website was not reflective of NZORD's commitment to the value of the Treaty of Waitangi and our obligations to Māori as tangata whenua and partners. This gap prompted us to provide Te Reo translation on the website in the hope that Māori whānau who were living with a rare disorder would feel more comfortable with approaching NZORD for support and information.

This will be a phased approach as time and resources allow, however the first phase is completed and these pages have been uploaded to the NZORD website.

When a translation exists, links between the English and Māori versions of a page will appear in the header of the page. However, when no translation exists, the links will be inactive.

SWAN NZ

SWAN New Zealand is a support group for New Zealand patients and families affected by an undiagnosed genetic condition - a ‘syndrome without a name’. SWAN NZ has been established by the New Zealand Organisation for Rare Disorders (NZORD). SWAN NZ has now been running for four months, we have twelve members and would like to hear from anyone else who would like to join.

SWAN NZ now has its own logo which we are very proud of, special thanks to Harry Ambrose who donated his time and creative talents to come up with the logo.

SWAN NZ logo 

A SWAN NZ Facebook page has been set up and a Twitter account will be opened in due course. To visit the Facebook page, head to www.facebook.com/SWANNZ/.

There has also been a closed Facebook page created for members, if you would like to join this group please email Lyndal.bremer@nzord.org.nz with a link to your Facebook profile and you will be added to this group. Any posts or discussions which take place on this page will only be seen by the members of this group.

We have our first patient story that will be added to the website in the next few days, keep an eye out for it. We would love some more patient stories 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.

NZORD Annual Report

NZORD’s annual report for 2017 is now complete. It highlights all that NZORD has been working on for the past year. It has been a busy but productive year and the team are extremely proud of what they have achieved.

The annual report is available on the website on the Reports page. If you would like a hard copy of the report please send the team a note at enquiries@nzord.org.nz and we will send one to you.

NZORD 2016 Annual Report cover 

Health Professionals Login

Results from the patient support group survey which NZORD rolled out in 2015 identified that there was a real need to assist primary care practitioners in the rare disorders space. In fact only 19.4% of support groups surveyed rated their general practitioner as having a good understanding of their rare disorder, or even knowing where to turn to next for information.

To correlate the feedback from the Patient Support Group Survey with the experience of general practitioners, NZORD along with the Royal College of General Practitioners ran a brief survey. The results of the GP survey and a GP working group highlighted that what GPs really wanted was an online tool specifically aimed at health professionals. Hence the introduction of the health professionals login, this online tool will serve three main purposes:

To help GPs connect with specialists who have had at least some experience caring for a patient with that particular rare disorder.

We are pleased to advise that by reaching out to our very own 250+ wonderful support groups we were able to collect the names of specialists across the country – thank you! This along with the fantastic efforts of Cervin Media led to the beginnings of a NZ Rare Disorders Specialist Directory. It is hoped that this list will go from strength to strength, and assist general practitioners in connecting with others in the often challenging world of rare disorders.

An easy to navigate encyclopaedia of rare disorders. NZORD sees Orphanet as the gold standard for this, so we have promoted Orphanet to GPs around the country.

Some informative literature that could be given patients as a starting point. Many were quite surprised to note that when combined rare disorders affects more people than diabetes in NZ! A leaflet and information card have been developed, these can be ordered by emailing enquiries@nzord.org.nz.

Please see visuals of the literature below.

NZORD flyer page 1
NZORD flyer page 2
NZORD awareness card page 1
NZORD awareness card page 2