Main image

Join us this Rare Disease Day to help those with a rare disorder


$8,496 donated

Given by 55 generous donors in 6 weeks

  Donate

This Rare Disease Day give some love and money to improve healthcare & wellbeing for people and their whānau living with a rare disorder.

Main image
  Nationwide

Nicola's boy James was taken from his family at just 5 years old by a condition that is yet to be diagnosed. It was a raw experience that no parent could ever prepare for, let alone imagine.

Nicola & James' story is one of many we hear at Rare Disorders NZ every day.

This Rare Disease Day (29 February 2020) give some love and money to support those with a rare illness in NZ. We need your help right now to fulfil our mission - to improve healthcare and wellbeing for people and their whānau living with a rare disorder.

“Without Rare Disorders New Zealand we would have had nowhere to turn for support. Now it’s time to help them.” - Nicola.

You might be surprised to find that as many as 300,000 people in NZ live with a rare disorder. Half of those are children, many of whom will not make it to adulthood. Rare disorders impact everyone in a family, from parents giving up work to become caregivers to siblings who struggle to understand what’s happening.

It can be lonely, and scary, living with a rare disorder.

But here’s the issue: rare disorders receive less research money than more common illnesses, treatments are expensive and not always available, and where treatments are available they are seldom funded by the government.

What would happen if you had a less common disease? Would you get a fair level of care?

How Rare Disorders NZ can help:

We work tirelessly to provide connect people to support groups and each other, provide information on available disorders, and guidance for medical professionals. We connect people with related disorders, and we amplify their voice in calling for fairer, more equitable treatment. We also raise awareness of the range of complex conditions that are often ignored, and work hard to reduce the uncertainty that causes so much stress.

Here’s the good news: we have a plan for positive change. We believe that we can do better as a nation with the way we provide healthcare to those with a rare disorder. We’ve put together Fair for Rare campaign with strategic priorities for a National Framework that we will be presenting to the government at a special Rare Disease Day event.

What you can do to help:

We desperately need your help so we can continue this important work. Our funding is being steadily reduced, even though demand for our services has only increased. People that are suffering from a rare illness need our help, and we need yours.

Please consider a generous donation.

We know that isn’t always possible, but even if you can’t give money there are other ways you can help: share this page on your Facebook or Twitter account, update your Facebook profile photo with our custom frame, and more importantly, get involved on Rare Disease Day by letting everyone know that Rare is Everywhere.

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

To continue to connect and support the rare disorder community in New Zealand.

Other page links


Latest update

Update image

Thanks to you we're building momentum  27 February 2020

Posted by: Rare Disorders NZ (formerly NZORD)

Rare Disease Day is almost here, and tomorrow we present our strategic priorities to the government. Our CEO Lisa Foster is on the AM show tomorrow morning, and initiatives such as our Rare Beer are bringing attention to those living with a Rare Disorder, and the challenges they face. So thank-you to everyone who has supported us so far. It's because of you that we can continue our important work!

Read 1 more update


Latest donations

  • Brent

    Brent 3 mins ago

    Private

    Such a great cause

    Private

  • Teresa

    Teresa 3 hours ago

    $30

    $30

  • Ashton

    Ashton 11 hours ago

    $50

    $50

  • Bernie

    Bernie 18 hours ago

    $150

    Love your work James McG! A great example of effective and generous voluntary work in motion. Thanks for giving Rare Disorders NZ a voice. If only I could win the $50 Million Lotto Draw this weekend...imagine how many people's lives would be enhanced through this charity. Perhaps Lotto NZ can donate some of their profits.

    $150

  • Amy

    Amy 18 hours ago

    $20

    $20


Who's involved?

Rare Disorders NZ (formerly NZORD)'s avatar
Created by, and paying to a verified bank account of, Rare Disorders NZ (formerly NZORD) (Charity)

Registered Charity A Registered Charity has legal recognition under the Charities Act 2005.
Tax credit Donations of over $5 are eligible for a New Zealand charitable giving tax credit.
Page Moderated The page has been checked by our team to make sure it complies with our terms and conditions.

Fundraise

You can start a fundraiser to have your own page that raises money directly for the beneficiary.

Our other pages


Got a question for the page owner?

Ask one here

Any concerns?

Report this page
This page was created on 13 Jan 2020 and closes on 31 Mar 2020.
$8,496 donated

Given by 55 generous donors in 6 weeks

  Donate Fundraise Share
Share
Share a link to this page to help spread the word

  Facebook

  Twitter

  LinkedIn

  Email

  Copy Link

  Embed

×