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The Paediatric Society of New Zealand/Te Kāhui Mātai
Arotamariki o Aotearoa welcomes the publication of a parent
and caregivers guide for children newly diagnosed with a
rare disorder, launched at Government House
yesterday.
The booklet, produced by Rare Disorders New
Zealand (RDNZ) is available online www.raredisorders.org.nz/patient-support/parent-and-caregiver-guide
and provides advice to parents and caregivers on how to
navigate the path of caring for their tamariki with a rare
disorder.
The launch also marks the beginning of Rare
Disorders Month, a month-long campaign run by RDNZ to
raise awareness amongst the general public and
decision-makers about rare disorders and their impact on
patients’ lives.
Wellington paediatrician, Dr Andrew
Marshall, who attended the launch says, “It is really
helpful to have a resource to offer to parents and
caregivers who have recently been told their child has been
diagnosed with a rare disorder, to guide them through those
initial stages of coming to terms with a
diagnosis.”
“It can be a very emotional time for
parents to be told their pēpi or tamariki has a rare
disorder. While each condition is individually rare, there
are a lot of commonalities in terms of the challenges the
tamariki and their whānau will be dealing with, and also
the support they will need. This booklet covers a range of
these issues into one readily available
resource.”
Around 300,000 New Zealanders live with a
rare disorder, of which half are children. While there is no
official definition of what is considered a rare disorder in
New Zealand, the European Union defines a disease or
disorder as rare when it affects less than 1 in
2000.
New Zealand lags far behind most OECD countries
in supporting people living with rare disorders and has no
government or health system policy or programmes specific to
this category of disorders. The Society supports RDNZ in
calling on the Government to provide more support for
families coping with a rare disorder
diagnosis.
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