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Fair for Rare NZ to launch at Parliament

Fuseworks Media
Fuseworks Media

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, explains chief executive Lisa Foster.

"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 Ms 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. "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.

"A National Rare Disorder Framework would identify positive solutions to reduce the costs of chronic health conditions by addressing need earlier, enabling more people to participate in work and the community.

"Such measures would also lessen both the time required away from work and the mental stress for patient carers. All of which would directly benefit the New Zealand economy."

Ms Foster expects the two-hour launch - which is to commence at 2pm - to be well attended by a broad range of politicians as well as patients, families, carers, health professionals and researchers keen to see proactive action.

All stakeholders and interested parties are welcome at the launch, which will serve as a celebration of people with rare diseases in recognition of the collective challenges they face.

Rare Disorders NZ will formally announce the seven strategic priorities support groups have identified as highlighting the range of issues people living with a rare disorder face when dealing with the health system.

"Together, we can improve healthcare and wellbeing for people and their whanau living with a rare disorder in New Zealand," says Ms Foster. 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. Those wishing to make a valued contribution can do so via the organisation’s Givealittle page

About 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.

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