Newsletter 2018 #5

NZORD Newsletter - October 2018
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Rare is everywhere: Meet Samantha

“It’s not your situation that determines your mind, but the way that your mind determines your situation.”

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Fair for rare: Collette's editorial

Happy Spring everyone.

I was fortunate recently to attend the Australian Pompe Association meeting in Noosa where the focus was on advocating for the addition of Pompe Disease to newborn screening across Australia.  The need for this is heartbreakingly illustrated by the story of baby Nate. NZORD supports the NZ Pompe Network in their efforts to get newborn screening for Pompe implemented in New Zealand.
Timely diagnosis, access to medicines, carer support, research and access to support services are all part of the wider picture of issues facing the rare disorder community.  At NZORD we increasingly see our role as being to draw people together with the aim of bringing systemic change. We are commencing work on developing an overarching Rare Disease Policy document over the next 6-12 months. This will be a one-stop information and reference tool for the evidence-based policies the rare disorder community needs to have implemented in New Zealand. We will be actively seeking your views and input through this process.

In the meantime, it's business as usual as we work alongside PHARMAC to observe their process during the latest call for proposals for rare disease medicines which yielded 13 applications (see below). The new rare disease PTAC subcommittee meets in November and we will be keenly asking for updates on the outcome of those meetings.  

We are looking towards 2019 and planning is underway for Rare Disease Day in February. Keep a close eye on our website and emails for some exciting announcements coming about events closer to the time!

Ngā mihi,
Dr Collette Bromhead

PHARMAC applications for medicines for rare disorders

PHARMAC has received 13 supplier funding applications for medicines for rare disorders. These 13 medicines have been published on PHARMAC’s website. The Rare Disorders Subcommittee will consider these applications at its first meeting in November 2018.
NZORD is hopeful that some of these medicines will be funded as the Minister of Health has indicated rare disorders are a priority for him as indicated in his letter of expectation to PHARMAC in July.

Rare disease researchers awarded

NZORD recognised two rare disease researchers at the Queenstown Research Week Satellite on Rare Brain Diseases in August.

The best poster prize was awarded to Marie Viola, a Masters student from the National Institute of Molecular Biology, University of Philippines Diliman, who completed her research on a rare form of Parkinson’s disease which is endemic to the Philippines. 

The best talk prize was awarded to Nadia Mitchell from the Faculty of Agriculture and Life Science at Lincoln University. She gave an excellent talk on gene therapy in a sheep model of Batten Disease.

These researchers were given $250 Prezzy cards by NZORD’s Chief Executive Dr Collette Bromhead in recognition of their work.

Special Interest Group established

NZORD has established a Special Interest Group (SIG) for any researchers working on rare diseases in New Zealand. Convened by Professor Mike Eccles of the University of Otago (and NZORD Board of Trustees Member) the group will meet twice yearly to share research ideas, results, collaborations, joint grant bids and expertise.

The first meeting will take place on 21 November at Otago University. NZORD will attend these SIG meetings and report back any relevant findings or invitations to participate in research, to our rare disease community.

Education session 2019

Save the date for an education session aimed at patients and carers. This free event will feature a number of speakers, including a representative from PHARMAC, as well as a collaborative workshop to help guide you through your health journey. All welcome.

Date: Tuesday 26 February
Time: 10am-12.45pm
Venue: central Wellington 

Carers' survey - have your say

The Carers’ Strategy Action Plan is being refreshed for 2019-2023. The Action Plan will identify what the government is committed to achieving in the next five years to support those people providing care for friends or family/whānau members with their everyday living because of a health condition, injury, frailty, or disability.

You can find out more, including how you can have your say, at:

Connect with NZORD via Facebook
Visit the NZORD Website

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

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