NZORD Newsletter 2015 #5 – November 2015

Rare Disease Day 2016

Rare Disease Day 2016 - save the date

Rare Disease Day 2016 falls on a leap year – making it extra special. To celebrate NZORD will be hosting a Cocktail Evening on Monday 29 February 2016 at the Wellington Club in Wellington. Please mark this date in your diaries and watch out for more details coming your way soon.

The Rare Disease Day website has been refreshed for the upcoming festivities on Monday 29 February 2016. You can share your event on the website, simply head to rarediseaseday.org.nz and register your event, it’s a great way to publicise what you have planned for Rare Disease Day 2016.

You can also explore the website to find details on Rare Disease Day and some advice on holding events and fundraising.

If you have any photos from events held last year, it would be great to add these to the website, please email these to lyndal.bremer@nzord.org.nz.

SFWU donation

SFWU meeting

Recently NZORD were visited by members of the Service and Food Workers Union (SFWU) and presented with a $100 donation. As always NZORD is hugely appreciative of the support, Letitia went and spoke to the SFWU group about NZORD, the work the organisation does and and about Rare Disease Day 2016. We received some wonderful feedback from some of the members who attended the meeting:

"The SFWU Women's Standing Committee were thrilled to have Letitia O'Dwyer come and speak to them about NZORD, the work it does, disorders they support, drug funding, practical support, and how people can help.

We also heard about Rare Disease Day, and are thinking of things we could do to support them."

Tamara Baddeley SFWU

"I found it very educational and inspiring Letita enlightened me on a number of key diseases that are affecting our community that I never knew existed . I found her passion contagious and her daughter’s concept of designing an app for phones a very innovative way of approaching educating people through technology."

June Sparkle SFWU

“I was surprised there are as many as 7,000 Rare Disorders in the world.

We should be doing research in NZ so that we can treat disorders earlier.

NZORD sound like they provide a much needed service to people with rare disorders and their family/whānau.

It was great to be able to give them a small donation to help with some of the work they do.
We will have to help support the Rare Disease Day in February next year and help promote awareness of the organisation through our networks.”

Marianne Bishop SFWU Central Region Women’s Convenor

Patient support group survey 2015

This year NZORD conducted its inaugral survey of Rare Disorder Patient support groups in NZ. As many will be aware support groups provide an important function in the health environment, allowing patients and families to connect and share their experiences and knowledge in what are often very complex and demanding situations.

The exercise was important to NZORD for two key reasons:

  1. to allow us to better understand the challenges that are facing patients and families.
  2. to help us to shape our organisation to better serve the needs of the community.

While responses to the survey indicated a wide variety of unique challenges, there was also a great deal of commonality particularly in the realm of diagnosis and coordination between specialties.

These are of course particularly challenging issues given the small numbers of patients and existing workloads of clinicians, nevertheless NZORD is confident that we can continue to develop strategies which greatly improve outcomes for patients in these areas.

Another key area identified by the survey was the need to develop and strengthen the relationships we have with our support communities. NZORD is excited by this prospect, particularly due to the level of engagement demonstrated in responses received from patients, families and support group organisers. With this level of engagement we are confident in our ability to develop and strengthen existing support networks and infrastuctures.

We would like to thank all those who took part in the survey and look forward to continuing the conversation as we work toward innovative and collaborative approaches to better meeting the complex needs of all those who are are affected by a rare disorder. A stronger voice together.

Payroll Giving

Spark Payroll Giving

NZORD is now verified for Payroll Giving at Spark, if anyone knows any employees at Spark involved in Payroll Giving, please help us by putting in a good word for NZORD.

NZORD Annual Report

The 2015 Annual Report is due to be released the week commencing 2 November. It is looking fresh and distinctly NZORD thanks to the talented Daniel Webby our Support Group Liaison Manager. If anyone would like a copy of the report emailed to them, please email enquiries@nzord.org.nz.

Happy Birthday NZORD

NZORD birthday cakes

NZORD turned 15 in September. At a milestone such as this, it is good to take stock and celebrate how far this organisation has come and plan for the next 15 years. As the photo illustrates, the cupcakes tasted as good as they looked. Here's to the next 15 years NZORD team.

Key dates over the festive season

This will be the last newsletter for 2015, our next newsletter will be due out on the 1 February 2016.

Please note that the NZORD office will close 24 December 2015 and will re-open Monday 11 January 2016.

The NZORD team would like to take this opportunity to wish everyone safe and happy holidays, until next year.

The NZORD team.