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

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.