Newsletter 2018 #6

NZORD Newsletter - December 2018
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Rare is everywhere: Meet Luca

"It's so hard to believe now how small he was and what he's been through."

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Fair for rare: Collette's editorial

I attended the Rare Voices Australia (RVA) summit in Melbourne last month where their government made a significant announcement regarding rare disease strategy and related policy.

Minister Greg Hunt announced the Liberal Coalition Government’s endorsement of RVA’s Fair For Rare Framework Document in its entirety and funding of $154,000 to allow RVA to continue building the policy and consulting widely across Australia. The Shadow Health Minister spoke and confirmed her Party’s endorsement of the policy also, so bipartisan support exists – a huge achievement for RVA!

NZORD will be working hard to emulate RVA’s success and make sure that all people and their families living with a rare disease in New Zealand get fair access to diagnosis, treatment and care.

Thank you for all your support and encouragement this year. I hope you and your families have a happy, healthy Christmas break.

Ngā mihi,
Dr Collette Bromhead

Australia’s Action Plan for rare disease

The Hon Greg Hunt, Minister of Health, opened the Rare Disease Summit by announcing the Morrison Government’s commitment to patients with rare diseases. The Morrison Government will commission Rare Voices Australia to work with all stakeholders to deliver the National Rare Disease Framework with $154,000 in grant funding.

“The Morrison Government’s announcement, supporting a National Rare Disease Framework, ensures the best possible outcomes for current Government investment in rare disease. It’s the only way to help guide the most effective rare disease policy now and in the future. Additionally, it helps to raise the profile of rare disease more permanently and most importantly, ensures no Australian is left behind.”

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PHARMAC applications for medicines for rare disorders

The Rare Disorders Subcommittee had their first meeting last month to consider the 13 supplier funding applications for medicines for rare disorders. 

These medicines have been published on PHARMAC’s website, along with the members of the Subcommittee. Next steps for applications received will be communicated in the second quarter of 2019. NZORD will be following up with PHARMAC for more details at our next meeting. 

Education Session – 26 February in Wellington

NZORD is running a free Education Session for the chance to meet, talk and share with others living with rare disorders. This will be a morning meeting with two speakers and a workshop dedicated to addressing some of the challenges faced by those with rare disorders. All welcome. 

Learn more and register

Rare disorder researchers' meeting

New Zealand’s first meeting of rare disorder researchers took place at Otago University last month.

Fourteen researchers from around New Zealand met in Dunedin at a meeting hosted by NZORD and Board of Trustee member Professor Mike Eccles on 21 November. The aim was to bring together researchers in a relaxed and collegial atmosphere to build connections and collaborations.

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

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