Rare Disorders NZ December 2024 Update

20 Dec 2024

Rare Disorders NZ Pānui

December 2024

Valuing Life summit group shot
Message from the Chief Executive

Greetings and kia ora koutou,

2024 seems to have raced by especially quickly! For rare disorders the year was dominated by the Government’s Rare Disorders Strategy - punctuated with impatience as its release was delayed, with celebration when it was finally published in July, and frustration that Manatū Hauora has been unable to convene a meeting of the co-implementation group because of Te Whatu Ora’s increasingly entrenched decision not to engage. To make things even more challenging it has now emerged through their just released three-year workforce plan that Te Whatu Ora apparently believes that no workforce planning is required to improve services for people living with rare disorders, even though the Rare Disorders Strategy says there is.

The RDNZ team have throughout been fighting for the health system to urgently prioritise implementation of the Strategy and will continue to do so for as long as it takes next year.

We couldn’t have done this and the many other initiatives we’ve undertaken this year without the backing of our network of friends, colleagues and supporters. – so thank you for standing with us as we’ve worked to achieve our vision of “best possible health and wellbeing for people and whānau living with rare disorders in New Zealand/Aotearoa”.

As the year draws to a close, on behalf of the RDNZ team I wish everybody Meri Kirihimete, and very best wishes for the summer break.

Ngā mihi,
Chris Higgins
Chief Executive




    Glow Up and Show Up for Rare in March

    March is Rare Disorders Month, and we are gearing up for a great month of raising awareness and celebrating the rare community in 2025.

    Ways you can start getting involved:
    You can now purchase your own Glow Up Show Up t-shirt through our new online shop. 
    Make your participation in Round the Bays matter by registering to fundraise for Rare Disorders NZ. Find links to register in Auckland, Wellington or Christchurch on our website here. 
    Nominate who you think has made a difference to the wellbeing of New Zealanders living with a rare disorder for our 25th anniversary awards celebration on Rare Disease Day. Nominations close 20th December so get yours in quick here! 
    #ShowUp for rare on social media by sharing a photo of yourself with one of our temporary tattoos! To order your free tattoos contact RDNZadmin@raredisorders.org.nz

    And remember to include the hashtag #GlowUpShowUp and tag @RareDisordersNZ on Facebook or @RareDisorders_NZ on Instagram.






Our petition is still open – please sign today!
Stand with the rare disorder community in demanding Te Whatu Ora | Health NZ urgently engage with Rare Disorders NZ and develop an implementation plan for the Rare Disorders Strategy.
Sign the petition here to make our collective voice louder.
We had MPs question Te Whatu’s Ora’s leadership about the lack of action to implement the Strategy during Parliament’s Scrutiny Week. See the exchange here. 

Thank you image




 Thank you!
We would like to acknowledge and thank the following sponsors for funding key projects for us over the past two months:
Frimley Foundation
One Foundation
Trust House Foundation
The Lion Foundation
TG Macarthy Trust

Our Collective

Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 150 disorder-specific support groups.

Our work is informed by the issues important to our collective. We work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.

Learn more