Fair for Rare NZ
Let those with a rare disorder know they are not alone.
Support Rare Disorders NZ this Rare Disease Day on 29 February 2020.
Fair for Rare NZ is a nationwide campaign to raise awareness for the 300,000 New Zealanders living with a rare disorder led by Rare Disorders NZ 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,” says Rare Disorders NZ chief executive Lisa Foster
“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.
“Together, we can improve healthcare and wellbeing for people and their whanau living with a rare disorder in New Zealand,” says Ms Foster.
“Furthermore, to honour New Zealand’s recent commitments to respective United Nations and Asia-Pacific Economic Co-operation agreements, we are calling for collaborative development of a New Zealand National Rare Disorder Framework to enable responsive healthcare for all people living with a rare disorder. Effective policy can reduce the fragmentation and high level of uncertainty, and offer a clear pathway for cohesive healthcare.”
Ms Foster says such initiatives would not only benefit those with a rare disease, but have much further-reaching advantages for wellbeing and contribution to society.
Rare Disorders NZ – which this year is also celebrating its 20th anniversary – is seeking further funding to continue its important work on behalf of those living with a rare disease.
This Rare Disease Day give some love and money to support those with a rare illness in NZ. Those wishing to make a valued contribution can do so via the organisation’s Givealittle page