May 14, 2024, 12:00 PM
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Kia ora koutou and greetings,

Even though this year’s Rare Disease Day and Rare Disorders Month are ever increasingly behind us, I for one continue to bask in the afterglow of our campaigning and all the associated events and initiatives that we undertook. Every one of the RDNZ staff team contributed in some significant way to the success of the campaign, so a big shout out to all who were involved including Alanna, Alex, Angela, Julian, Kim, Lew, Maurice, Misty and Susan for an outstanding result.

I want to especially acknowledge and thank all the support group leads and people living with rare disorders for the way in which they supported the campaign and for being so courageous and willing to publicly share their stories through print, television, radio and social media platforms. It was a real privilege and personal highlight for me to have acknowledged this at the support groups lead hui on Rare Disease Day itself on 29th February. You can read my reflections on the month in this opinion piece published in the NZ Herald this week. 

The weekend news saw the announcement of Hon Paula Bennett as Pharmac’s new Board Chairperson. It so happens that I had the opportunity to talk to her just yesterday at the PVA/Medicines NZ ‘Valuing Life’ conference where I was able to personally congratulate her on her appointment, emphasise the importance of her exercising a leadership role in ensuring that the Pharmac executive values as allies rather than denigrates patient advocates. I offered to talk to her further about the specific issues that are important to the rare disorder community as part of her onboarding and orientation. 

A few updates:

  • Rare Disorders Strategy. We are advised that Health Minister Hon Shane Reti has considered the RDS and that work is progressing well towards production of a final version. Our hope is that there there’ll be plenty in there which will require RDNZ to be actively involved in its implementation, and we’re looking at how we can create and fund the additional capacity that will be required to do this.
  • Individual Giving Specialist. Part of the solution to generating more funding is to diversify our sources of income by initiating a regular donor/giving programme. We’re therefore recruiting for a part time individual giving specialist, with details available here. If this sounds like you, or someone you know, please get in touch.
  • Rare Disorders Clinical Advisory Group and Rare Disorders Research Network governance group. We’re finalising the terms of reference for these two new groups and will be inviting expressions of interest soon.


Chris Higgins
Chief Executive

Chris Higgins

For the second year running Aotearoa showed up for Rare Disorders Month

Glow Up Show Up banner

It was truly heart-warming to see so many individuals and communities #GlowUpShowUp for Rare during March and we are so grateful to everyone who got behind the campaign.

From politicians and researchers to health professionals and support groups, there were opportunities for everyone to #ShowUp and they did. You can read more about some of the key events that were held and achievements from the month below.

Glowing up for rare 

Building lighting up for rare

From Invercargill to Whangarei Rare Disease Day has never been brighter in Aotearoa with 45 buildings and monuments across the motu this year committing to #GlowUp on Rare Disease Day. Notable places included Eden Park in Auckland, Otago Boys High, Christchurch Airport and Wellington's Michael Fowler Centre all showing solidarity and aroha for those impacted by a rare disorder

White papers launched at parliament

white paper launch

On the eve of Rare Disease Day, over 100 people, including three government Ministers and representatives from across the political spectrum, gathered for the launch of our Impact of Living with a Rare Disorder in Aotearoa New Zealand and Impact for Whānau Māori of Living with a Rare Disorder white papers at parliament. These papers were based on Rare Disorders NZ’s 2023 Voice of Rare Disorders Survey – the largest-ever survey of consumer-reported outcomes for rare disorders in this country. We were honoured to have Dr Gareth Baynam, Medical Director of the Rare Care Centre in Western Australia as the guest speaker at the launch.

Read more about the event and the papers here
Rare disorders researchers connect and share knowledge

research event

From clinical practice to therapeutic development and health systems delivery, Rare Disorders NZ, in collaboration with Wellington Univentures and Victoria University of Wellington, brought together experts from a wide range of fields on the eve of Rare Disease Day who all share in common their interest and expertise in rare disorders.

Read more here
Celebrating the invaluable work of support group leads

support group lead event

On the very rarest of Rare Disease Days, 29 February, Rare Disorders NZ could not imagine a more fitting way to mark the day than by bringing together support group leads from across the country for a morning tea to acknowledge the invaluable work they do providing guidance, support and friendship to so many people living with rare disorders in Aotearoa.

Read more here

Rare Beer Challenge 2024

Rare beer challenge

On 8th March the annual Rare Beer Challenge took place, raising $10,000 for Rare Disorders NZ! The event was superbly run as always by our good friends at Fortune Favours, who do an amazing job mobilising the craft beer community to get behind the cause.

Read more about this year’s Rare Beer Challenge and the winners here.
Essay writing competition winners

essay comp winners

We were blown away by many of the entries to the essay competition for health professional students we ran during Rare Disorders Month. The top three shone through due to their out-of-the-box insights on rare disorders – just the kind of thinking required to grasp the complexities of rare. Congratulations to Gavin, Alexandra and Jackie for your outstanding perspectives

Read the top three entries here.
Rare Disorders NZ attended the Access Matters Aotearoa Parliament March

Access Matters protest

"We need to be a more inclusive society."

This was a message echoed throughout the speeches at the Access Matters Aotearoa march to parliament, calling for better accessibility in Aotearoa.

Rare Disorders NZ was there in support and representing the 300,000 Kiwis living with a rare disorder.

You can read more about Access Matters here. 

Round table of companies meeting

Round table of companies photo

We held our biannual Round Table of Companies (RTC) meeting at the end of April. The RTC are a group of pharmaceutical companies with a common interest in rare disorders and orphan drug development, and for this meeting we invited Todd Stephenson MP to guest speak and discuss with the group ways of improving access to rare disorder medicines.
RDNZ at Perinatal Society of Australia and New Zealand annual congress

Chris was invited to speak at the Perinatal Society of Australia and New Zealand annual congress in Christchurch in April and spoke about the work of Rare Disorders NZ and the importance of newborn screening for early detection of rare genetic disorders.
Mental health and wellbeing support

We have updated information about how to obtain mental health and wellbeing support on our website. You can find it here.
Impact Report 2022/2023

Our Impact Report for the financial year 2022/2023 is now available on our website.

You can find it here. 


Submission on the 2024 Budget Policy Statement

Rare Disorders NZ has made both a written and oral submission on the 2024 Budget Policy Statement to the Finance and Expenditure Committee outlining our expectation that the 2024 Budget will include allocations which are sufficient to address the issues preventing people living with rare disorders from living their best lives.
Submission on proposal to fund continuous glucose monitors, insulin pumps, and insulin pump consumables

Rare Disorders NZ welcomes the inclusion of pancreatogenic diabetes mellitus in the conditions that these products are proposed to be funded for, and appreciate that the definition used includes rare causes of pancreatogenic diabetes like Cystic Fibrosis and Permanent Neonatal Diabetes Mellitus.
Submission to the New Zealand Royal Commission COVID-19 Lessons Learned Te Tira Ārai Urutā public consultation

While Rare Disorders NZ commends New Zealand's public health response to the COVID-19 pandemic that meant mortality from Covid-19 in New Zealand has been kept relatively low, it is crucial to acknowledge that individuals within the rare disorder community have encountered significant challenges from the onset of the pandemic until today.
RDNZ welcomes Pharmac’s expansion of the parallel assessment pathway

Rare Disorders NZ welcomes Minister Seymour’s announcement that Pharmac are changing how they accept funding applications for new medicines to speed up the assessment process. We hope this will be the first of many steps to make Pharmac’s assessment processes faster and more efficient for rare disorder medicines. We also continue to call for a commitment to more equitable access to appropriate treatment for people with rare disorders, ideally as part of the imminent rare disorder strategy, as recommended by the 2022 Pharmac Review.
RDNZ Submission to Pharmac on the proposal to fund Shingrix for the prevention of shingles in immunocompromised people

Rare Disorders NZ supports the principles behind the proposal to widen the access for recombinant varicella zoster virus vaccine (branded as Shingrix) for prevention of shingles in immunocompromised people from 1 July 2024.
However, we do find the criteria very narrow.

Access all the submissions here.

Media Statements

New changes to support funding further deprive disabled Kiwis of choices and opportunities, says Rare Disorders NZ

Rare Disorders NZ is alarmed that the Minister for Disability Issues is blaming carers for misusing support funding intended for their children as a reason for Whaikaha suddenly tightening how disability support funding can be used, without any consultation with the disabled community.

Read our media statement here.

Pharmac-initiated lengthy review a waste of valuable time and resources, says Rare Disorders NZ

Rare Disorders NZ is very concerned that Pharmac will not extend access to life-saving medicines for children with rare disorders in line with child cancer patients under Rule 8.1b, despite Pharmac concluding from its own review the real impact on treatment and health outcomes this rule has for patients.

Read our media statement here.

Rare Disorders in the Media

With the help of PR agency Māia and the rare disorder community, Rare Disorders NZ achieved:

58 total media pieces throughout and leading up to Rare Disorders Month2,373,795+ total media audience impression$3,306,465+ total estimated advertising valueSome key highlights:

26 Feb - RNZ Nights, Complex Regional Pain Syndrome: Life with a rare disorder
28 Feb – TVNZ News, Thousands of Kiwis with a rare disorder let down by health system
28 Feb – Newshub, The harrowing struggle for family with two children who have rare disorders
4 March – RNZ The Detail, Rare disorders aren't unusual enough to ignore
14 March – NZ Herald Kahu Rare Disorders Month: Indigenous health models could ease medical pressures
15 March – Radio Waatea Hariata Wooller | Rare Disorders Advocate
21 March – NZ Herald Rare disorders: Mum’s letter to Pharmac minister David Seymour after forced overseas move - Samantha Lenik
25 March - Woman’s Day Alanna’s mission to help kids with rare conditions: ‘it’s been such a distressing journey!’

Thank you 

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

  • Steadfast Foundation
  • Deane Endowment Fund
  • Grassroots Trust Central


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