Our campaign focus for Rare Disease Day 2020 has two parts:
1) RDNZ has launched an awareness and fundraising campaign to ask for support to continue our valuable work.
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.
Read more on our Givealittle page
2) A nationwide campaign to raise awareness for the 300,000 New Zealanders living with a rare disorder is to be launched at the Grand Hall in Parliament on Friday 28 February.
Fair for Rare NZ, the Rare Disorders NZ-led campaign is calling for the establishment of a New Zealand National Rare Disorder Framework.
Rare disorders are often neglected and invisible yet they affect about 6% of the population – half of whom are children. So collectively, rare disorders are not rare.
Those living with a rare disease in New Zealand face inequitable access to diagnosis, treatment and care – particularly when compared to countries such as Australia.
Rare Disorders NZ and its 140 support groups are calling on New Zealanders to acknowledge the common challenges faced by people living with a rare disease.
Read our media release