Newsletter 2018 #2

NZORD Newsletter - April 2018
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Greetings from the NZORD Chief Executive

Many of you will have heard Minister of Health David Clark on Radio New Zealand’s Nine to Noon programme during an interview with me state that: “To find a way to support rare disorders is part of my personal agenda.” Despite these conciliatory words, NZORD has not yet been given an opportunity to meet with the Minister to discuss progress on a Rare Disease Medicine Fund. 

We have been in discussions with the Ministry of Health National Screening Unit team regarding the review of our contract with them and are anticipating news on our future shortly. We have been very explicit with the Ministry about the implications for our patients and stakeholders if NZORD were to face closure due to insufficient operational funding.

RDD symposium – on 22 February we were very proud to host the first conference NZORD has held for five years. With a mixture of clinicians, researchers and personal stories of living with rare disorders, the day was an opportunity for people to connect and build support networks. You can read about the feedback we received below.

We are also excited to launch our 'Rare is Everywhere: Stories Project' in this newsletter. Please get involved and share your story so we can keep the national conversation about rare disorders going for our politicians and decision makers.

Ngā mihi,
Dr Collette Bromhead

Latest updates from our website

What have we been up to?

NZORD and funding for rare diseases featured prominently in the media over the last two months. A key highlight was Collette’s interview on Radio New Zealand’s Nine to Noon programme, along with Minister of Health David Clark who stated: 
"[Rare disease funding] is an equity issue in my mind and that’s why I have prioritised it." NZORD will keep pushing the the Minister to ensure the rare disease community gets a fair deal. 

Overview of recent media
Collette made the opening address at the inaugural NZ Pompe Network Conference on Saturday 24 March in Auckland. This beautifully presented and well attended meeting bought the very frontiers of international gene therapy research to our shores and was an invaluable get together for the tight knit Pompe whānau from Australia and NZ who embody the values and power of patients working together to support one another and advocate as a group.
Congratulations to Allyson Locke and Samantha Lenik for running such a great meeting.

Our Relationship Manager, Lisa Crawford, attended a number of meetings and conferences including a Carers Alliance meeting at Parliament. She also managed to speak directly to the Health Minister at the National Rural Health Conference.

Rare Disease Day update

Our Rare Disease Day symposium in Auckland on 22 February was a huge success - 94% of attendees surveyed rated the symposium Excellent/Very Good; and 87% stated they are Extremely Likely/Very Likely to attend another NZORD event.

Speakers’ presentations are available to view on our website

NZORD intends to host another event in 2019, details and location to be confirmed.

Rare is Everywhere: Stories Project

Would you like to share your experiences of living, or caring for someone, with a rare disorder?

NZORD has launched the 'Rare is Everywhere: Stories Project' to share people's challenges, triumphs and experiences. We are collating stories that cover the full range of health journeys for use on our website, in our newsletters and in the media.

Conferences and meetings

Asia Pacific Prader-Willi Syndrome Conference – Brisbane October 2018
The conference theme is Inspire, Include, Empower, which symbolises the goal of creating a better life, with fuller opportunities, for all people with Prader-Willi Syndrome.

Queenstown Research week – August 2018
Collette will be speaking as part of the Rare Brain Disease Satellite meeting of the Queenstown Research week this year on Thursday 30 and Friday 31 August. The meeting will span cellular mechanisms to clinical practice and Collette will be talking about the role of NZORD as well as reminding researchers to bring patients along with them on their journey of discovery. NZORD will be sponsoring prizes for the best student presentations to recognise and encourage future rare disease researchers.

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New Zealand Organisation for Rare Disorders · PO Box 9514 · Marion Square · Wellington, 6141 · New Zealand

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