What would happen if you discovered you had a rare disease? Would you get a fair level of care?


What would happen if you discovered you had a rare disease? Would you get a fair level of care?

Media release from Rare Disorders NZ

Rare Disease Day this year is on the 29th of February. Maybe you haven't heard about it yet. That’s not uncommon - rare disorders often slip under the radar. They also 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. It can be lonely, and scary, living with a rare disorder.

Will you donate today to support us as we help those with rare disorders?

You might be surprised to find that as many as 300,000 people in NZ live with a rare disorder. More than half of those are children, many of whom will not make it to adulthood.

Altogether, there are more people living with a rare disorder in our country than live with diabetes. We have a saying among our families: Rare is everywhere.

These statistics are heartbreaking, but we’re determined to fight for a future where everyone receives the same level of care, regardless of how rare their illness might be - but we need your help to make it a reality.

Will you donate today to support those with a Rare Disorder?

We work tirelessly to provide support groups, information on available treatments, and guidance for medical professionals. We connect people with related disorders, and we amplify their voice in calling for fairer, more equitable treatment.

And 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 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.

Will you donate today so that we can help those in need?

We know that giving money isn’t always possible, but even if you can’t give money there are other ways you can help: share our givealittle page on your Facebook or Twitter feed, 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.