INDEPENDENT NEWS

Join Us This Rare Disease Day To Help Those With A Rare Disorder

Published: Thu 13 Feb 2020 03:19 PM
A nationwide campaign to raise awareness and money for the 300,000 New Zealanders living with a rare disorder was launched last month by Rare Disorders NZ.
Nicola's youngest son James was taken from his family at just five 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.
“Without Rare Disorders New Zealand we would have had nowhere to turn for support. Now it’s time to help them,” says Nicola.
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.
Around 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.
“Rare Disorders NZ has 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 a 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,” says chief executive Lisa Foster.
Rare Disorders NZ works tirelessly to 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.
“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,” says Lisa.
Rare Disorders NZ, along with the 140 groups we represent, will launch the Fair for Rare campaign at the Grand Hall in Parliament on Friday 28 February. This event will be hosted by MP Liz Craig and is a call for acknowledgment and action for all New Zealanders living with a rare disorder.
Support Rare Disorders NZ via our Givealittle page http://bit.ly/rdd-nzAbout RDNZ
Rare Disorders NZ (formerly NZORD) is a connector hub and collective voice for patients and families affected by rare disorders. Rare diseases affect 6% of New Zealanders.
There is no acknowledged definition of rare disease in NZ, however RDNZ follows the European Union policy which defines a disorder as rare when it affects fewer than 1 in 2000. More than 6,000 rare disorders collectively affect around 300,000 New Zealanders. Of this number, 50% are children.
www.raredisorders.org.nz

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