#GlowUpShowUp for Rare Disorders Month

$3,690 donated
Given by 87 generous donors in around 4 months

March is Rare Disorders Month, and we are calling on Aotearoa to Glow Up and Show Up for the 300,000 Kiwis living with a rare disorder.

Wellington

March is Rare Disorders Month, and Rare Disorders NZ (RDNZ) is calling on Aotearoa to Glow Up and Show Up for the 300,000 Kiwis living with a rare disorder.

RDNZ is the advocacy and support body for the collective rare disorder community in Aotearoa. We have made enormous strides towards making New Zealand a better place for Kiwis living with a rare disorder by getting the Government to commit to developing New Zealand's first Rare Disorders Strategy and holding them to account on this, as well as ensuring it is informed by the lived experience of patients.

In addition, just in the last year our small but high-performing team:

- launched NZ's first guide for caregivers of children diagnosed with a rare disorder;

- got Aotearoa to Glow Up and Show up for Rare during our first Rare Disorders Month campaign;

- worked with Manatū Hauora on NZ's first Rare Disorders Strategy;

- launched an insights report on rare disorders in New Zealand;

- made 14 submissions on proposed changes to policies relevant to the rare community;

- responded to over 660 enquiries;

- welcomed 14 new patient support groups to our collective of now 159 support groups.

We rely on grants and donations to carry out our work advocating for access to world-class and world-leading health, disability, education and other services.

You can #ShowUp for the rare community this Rare Disorders Month by donating to support our work to improve the health and wellbeing of people and whānau living with rare disorders in Aotearoa.

About us

Rare Disorders NZ is the connector hub & collective voice for people affected by rare disorders and their families. We advocate for an equitable health system that works for the 300,000 Kiwis with a rare condition - around 6% of the population.

Use of funds

Your donation will go towards providing a place for the rare disorder community to turn to for connection, guidance, advice and resources.

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Latest donations

Private Donor
Private Donor on 23 Mar 2024
Private
Rare Disorders NZ

We appreciate you support. Thank you.

Rare Disorders NZ
Sam Macilquham
Sam Macilquham on 13 Mar 2024
$20
Rare Disorders NZ

Your donation is very much appreciated. Thank you.

Rare Disorders NZ
Frank
Frank on 12 Mar 2024
$29
Rare Disorders NZ

Thanks so much for your donation.

Rare Disorders NZ
Guest Donor
Guest Donor on 10 Mar 2024
$50
Rare Disorders NZ

Thank you for you donation, it is very much appreciated.

Rare Disorders NZ
Manawa
Manawa on 09 Mar 2024
Private
Rare Disorders NZ

We appreciate you donation - thank you.

Rare Disorders NZ

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This page was created on 11 Dec 2023 and closes on 11 Jun 2024.