Rare Disorders NZ: February update
Rare is everywhere: meet Shirley
His parting words to me were that “I would be in a wheelchair within five years so just get used to the idea.”
Fair for Rare NZ: Chief Executive's update
It's Rare Disease Day at the end of this month, a global opportunity to raise awareness of the 300 million people living with a rare disorder worldwide. This year we are thrilled to be launching the Fair for Rare NZ campaign at Parliament generously hosted by Dr Liz Craig MP. Rare Disorders NZ, and the support groups we represent, are calling for acknowledgement of the common challenges faced by people living with a rare health condition, along with a commitment to address these challenges through the development of a New Zealand National Rare Disorder Framework.
This event is part of Rare Disease Day 2020 and is also an opportunity to celebrate Rare Disorder NZ’s 20th birthday – please join us to commemorate two decades of supporting the rare disorder community (more details below).
New Zealand lags far behind most OECD countries in supporting people living with rare disorders and their families to access the best healthcare. Australia announced support of a national plan for rare disease patients in late 2018, ensuring that no one is left behind.
We also have a Givealittle fundraising campaign to help us fulfil our mission of improving healthcare and wellbeing for people and their whānau living with a rare disorder. Please visit the page and watch the video featuring James' story told by his mum Nicola, as well as others who Rare Disorders NZ have supported.
We can't do our important work focusing on real change in the lives of the thousands of New Zealanders living with a rare disorder without your support. A big thank you to the LAM Trust, Tuberous Schlerosis Complex NZ, NZ Pompe Network and LDNZ as well as a number of individuals, who have already supported Rare Disorders NZ with a generous donation.
Please consider giving a donation or promoting our Givealittle campaign through your networks. Our Government funding is steadily reducing and we are determined to continue the fight to ensure Fair for Rare for all New Zealanders.
Best wishes,
Lisa Foster
Fair for Rare NZ campaign launch
Dr Liz Craig MP will host our Fair for Rare NZ campaign launch at Parliament on Friday 28 February from 2-4pm.
Rare Disorders NZ, and the support groups we represent, are calling for acknowledgement of the common challenges faced by people living with a rare health condition, along with a commitment to address these challenges through the development of a New Zealand National Rare Disorder Framework.
This event is part of Rare Disease Day 2020 and is also an opportunity to celebrate Rare Disorder NZ’s 20th birthday – please join us to commemorate two decades of supporting the rare disorder community.
Help us help those with a rare disorder
We launched a nationwide campaign to raise awareness and money for the 300,000 New Zealanders living with a rare disorder last month.
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.
Please visit our Givealittle page
Rare Beer - Cheers for Rare!
Rare Disorders NZ and Fortune Favours craft brewers have created a beer specially brewed alongside people who have a rare disorder for Rare Disease Day 2020.
Buy a pint, spare a thought and spread the word that Rare is Everywhere. A donation from every pint purchased will go to Rare Disorders NZ.
Rare Beer launch:
Wednesday 26 February
6pm to 9pm
Fortune Favours brewery, Leeds Street, Wellington
Our Rare Beer will be available to purchase at other bars in Wellington throughout March, as well as a venue in Auckland - check our website later this month for more details.