Jun 16, 2020, 6:49 PM
Sue and Lizzie v3

Rare is everywhere: meet Lizzie

"I would make no changes to Lizzie’s lovely self, but I crave many, many changes to the world she lives in."

Fair for Rare NZ: Chief Executive's update

Covid-19 has changed everyone’s perception of the significance of societal health and wellbeing. This new awareness offers a platform for our leaders to develop new ways of doing things or building back better! RDNZ asks to be part of this recovery process as the recognised collective voice of people living with rare disorders.

RDNZ welcomes the Health and Disability System Review, especially the proposal that people be assessed for support on need, not diagnosis. This vital change in focus would make a huge difference to the thousands of people with undiagnosed rare conditions, as well as others who don’t tick a box and currently fall through the gaps.
Most New Zealanders have a keen sense of fairness. Even though each rare condition may have few people affected, when combined together as 6,000 types it makes up an astonishing 1 in 17 people! So please help us to gain fairness and get action by supporting our Fair for Rare NZ campaign.
The practical ways you can help are listed below, from sharing our Petition with your networks, to meeting with your local MP to explain why you need acknowledgement and fairness within the healthcare system.
Our campaign is for a National Rare Disorder Framework with seven key priority areas where people are falling between the gaps. This a starting point for our collective to work with Government, and offers a catalyst for acknowledgment and inclusion.
Rare disorders, as a worldwide population of 300 million people, are acknowledged internationally as one of the most significant issues facing our health system this century. The global rare disorder sector is working collaboratively to look towards 2030 and prepare for inclusive health policy which sees rare disorders as a priority area. Two clear successes include:

  • UN Political Declaration on Universal Health Coverage includes Rare Diseases, September 2019 (WHO is responsible for the implementation of UHC)
  • Memorandum of Understanding signed between WHO and Rare Diseases International, December 2019

There are global solutions, networks and plans in place that we can link into, but we need to be recognised as a health priority group within New Zealand first!

Please join our campaign to ensure our system is Fair for Rare.

Nga mihi,
Lisa Foster

Parliamentary Petition

Petition of Sue Haldane for Rare Disorders NZ: Develop a National Rare Disorder Framework
"I try to imagine if, when Lizzie was diagnosed with a lifelong condition, there was a blueprint for coordinated family care. Of course, the person diagnosed should receive laser-like focus, but primary caregivers also need a strategic support plan and formalised care."
Sue Haldane, Mum of Lizzie

Support our collective campaign asking for equitable healthcare for all people living with a rare disorder by signing this Parliamentary Petition and sharing with your networks. A paper copy of the Petition is also available on our website.

MP Liaison programme

The general election is fast approaching, so this is the perfect time for people to meet with their MP to share their story and explain why the government must commit to the development of a National Rare Disorder Framework. It’s time for rare disorders to be taken seriously.

RDNZ has created resources including an MP letter template and key messages to support those who want to share their experience with our policy makers.

Once the meeting has taken place, RDNZ will follow up with the MP to provide further information on the campaign and ask what their party will do for the rare disorder community.

Election manifesto

This election we are asking all New Zealand's policymakers to take rare disorders seriously to ensure equiatbel health outcomes for everyone. New Zealand lags far behind most OECD countries in supporting people living with rare disorders and their families to access the best healthcare.

New Zealand needs inclusive policies which acknowledge barriers for the thousands of vulnerable children, adults and their caregivers who continue to fall through the cracks. 

RDNZ has written to all the main political parties with eight questions defined by our collective. We will share the responses with the rare disorder community ahead of the election so our people can make an informed decision on the day.

Have your say: a new generation medicines policy

Medicines NZ has been working with the New Zealand Institute of Economic Research to look at what kinds of leadership, funding, services, workforce and technologies are needed to support optimal use of medicines for better health outcomes for New Zealanders. 

Download the discussion document to share your views. The consultation period closes on 6 July. 





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