Rare Disorders NZ: October Update

Greetings and kia ora koutou from Chief Executive Chris Higgins, writing from te toropaepae o te kōtuku, RDNZ’s new offices at 194 Riddiford Street, Newtown.

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As mentioned below work on developing New Zealand’s first Rare Disorders Strategy (RDS) continues, with Manatū Hauora’s consultation with specialists and experts due to conclude next week, and Te Aka Whai Ora currently writing up the outcomes of their consultation with Māori and whānau who live with rare disorders. One of the many issues that has arisen is whether the use of the term rare “disorders” is unnecessarily deficit based, and whether we should explore more neutral or positive language in how we describe ourselves. This is reflected in the interim name of RDNZ’s new offices, and our sibling organisation in Australia simply calling itself “Rare Voices”. Comments and thoughts are very welcome.

The idea of a centre of expertise for rare and undiagnosed disorders continues to be central to RDNZ’s campaigning, both for the RDS and generally, and we’ll have more to say on this after we’ve considered the outcome of the consultation with Māori and whānau, and experts and specialists.

Ngā mihi,

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Chris Higgins

Chief Executive

Rare Disorders NZ

Take our Voice of Rare Disorders Survey today!

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The Voice of Rare Disorders survey 2023 is now open!

We encourage anyone affected by a rare disorder in New Zealand to complete our survey so that we can build a comprehensive picture of what it means to live with a rare disorder in New Zealand in 2023, particularly the challenges and barriers people continue to face within the health and social systems to access the care and support they need. 

This data is so important to inform and educate stakeholders, policy makers and the general public, and to advocate for a health system that delivers for the rare disorder community. 

We encourage anyone living with a rare disorder in New Zealand, as well their whānau and carers to participate.

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The more responses we get, the stronger our voice becomes.

To take the survey click here

Thank you!

Rare Disorders NZ supports the My Life Matters campaign

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Ensuring that the voice of those with lived experience informs New Zealand's first Rare Disorders Strategy has been a cornerstone of the development of the strategy.

Rare Disorders NZ has consistently emphasised this requirement throughout the process to ensure the strategy is fit for purpose.

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Rare disorders omission from cabinet paper concerning

Rare Disorders NZ is alarmed that despite Manatū Hauora working for the past year on New Zealand’s first Rare Disorders Strategy to address the inequitable health outcomes for those affected by rare disorders, the rare disorder community has not once been mentioned as a priority population group in a recently released cabinet paper on the Minister of Health’s vision for primary and community healthcare in Aotearoa.

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Rare Disorders NZ calling for the removal of the Chair of Pharmac

Rare Disorders New Zealand is calling for the removal of Steve Maharey as Pharmac’s Chair after he has failed to take strong action against the CEO of Pharmac, Sarah Fitt, for the unacceptable language revealed in internal correspondence between Pharmac executives regarding journalist Rachel Smalley. We have written to both the current Minister of Health, Ayesha Verrall and the health spokesperson for the incoming Government, Dr Shane Reti.

Read our statement here

RDNZ and Whānau Āwhina Plunket collaborate on rare disorder training video

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It is hoped that this initiative will improve early identification of rare disorders in children, and ensure that children and their whānau receive the right support on their journey of managing their disorder.

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Improving access to Work and Income support for people living with a rare disorder

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We were really pleased to present at a professional development session with the Ministry of Social Development’s Regional Health and Disability Advisors in September, letting them know about Rare Disorders NZ and some of the challenges and barriers people living with rare disorders face when accessing support from Work and Income.

Our next steps will be working with the Health and Disability advisors to create a Q and A webinar resource outlining what’s available from Work and Income for people living with rare disorders, and how to access it.

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We are really pleased to be working towards improving the experience people living with rare disorders have with Work and Income.

RDNZ submission on draft statement on disclosure of harm following an adverse event

The Medical Council of New Zealand has been updating its statement on disclosure of harm following an adverse event and has sought feedback on its draft statement.

Rare Disorders NZ made a submission calling for misdiagnosis and delayed diagnosis to be recognised as causing harm.

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Therapeutic Products Act

We have received a letter from Minister Ayesha Verrall, including assurances about the Therapeutic Products Act and unauthorised medicine access:

I can confirm my intention that the Therapeutic Products Act (2023) (the Act) will continue to enable access to unauthorised medicines, including via pharmaceutical companies' compassionate access arrangements. As part of the work to implement the Act, Manatū Hauora officials will also explore regulatory options to ensure pharmaceutical companies continue to bring their new products to the New Zealand market. My expectation is that Manatū Hauora officials will engage with you directly on these issues.

You can read the Minister’s letter and our submission on Therapeutic Products Act here 

Gearing up to Glow Up and Show Up for Rare Disorders Month 2024

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After the success of our inaugural Rare Disorders Month Glow Up and Show Up for Rare campaign in March, we’re excited to be working on plans for our next Rare Disorders Month in 2024.

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Together we can bring rare disorders out of the darkness and into the light!

Rare Disorders in the Media

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Interview on Radio Waatea about Voice of Rare Disorders Survey

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We would like to acknowledge and thank the following sponsors for funding key projects for us over the past two months:

One Percent Collective

Lottery Community Fund

Trust House Foundation

Four Winds Foundation

Pub Charity Ltd

Kiwi Gaming Foundation