Fair for Rare to Launch at Parliament
A nationwide campaign to raise awareness for the about 300,000 New Zealanders affected by rare disorders is to be launched at the Grand Hall in Parliament on Friday February 28.
Themed Fair for Rare, the Rare Disorders NZ-led campaign is also targeting the establishment of a New Zealand Rare Disorder National 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,” 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 Rare Disorder National Framework to enable responsive healthcare for all people living with a rare disorder.”
Ms Foster says such initiatives would not only benefit those with a rare disease, but have much further-reaching advantages.
“A National Framework would identify positive solutions that reduce the costs of chronic health conditions by addressing need earlier, thus 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.
“We will also formally announce the seven strategic priorities Rare Disorders NZ and its member 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.”
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 Give a Little page [INCLUDE LINK].
January 13, 2020
return to media releases
Themed Fair for Rare, the Rare Disorders NZ-led campaign is also targeting the establishment of a New Zealand Rare Disorder National 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,” 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 Rare Disorder National Framework to enable responsive healthcare for all people living with a rare disorder.”
Ms Foster says such initiatives would not only benefit those with a rare disease, but have much further-reaching advantages.
“A National Framework would identify positive solutions that reduce the costs of chronic health conditions by addressing need earlier, thus 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.
“We will also formally announce the seven strategic priorities Rare Disorders NZ and its member 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.”
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 Give a Little page [INCLUDE LINK].
January 13, 2020
return to media releases