Today is International Rare Disease Day and marks the
start of the first Aotearoa Rare Disorders Month. Rare
Disorders New Zealand (RDNZ) is calling on Aotearoa to Glow
Up and Show Up for the rare disorder community throughout
March in recognition of a population who has been left in
the dark for too long.
The month is an advocacy and
support period for the more than 300,000 New Zealanders who
live with one of 6,000+ rare disorders.
RDNZ Chief
Executive Michelle Arrowsmith says Glow Up and Show Up for
Rare is all about shining a light on the urgent need for
action to improve the health and wellbeing for people living
with a rare disorder.
“The Government promised
action for this group of New Zealanders – now they need to
do right by them. From today and throughout Rare Disorders
Month, we will be putting a spotlight on rare disorders,
maintaining visibility, initiating important conversations,
and highlighting how we can all show up.
“Together
we can bring rare disorders out of the darkness, and into
the light.”
Activity kicks off today at Government
House with the launch of a Parent Guide for the thousands of
whānau of children diagnosed with a rare
disorder.
During the month of March, Aotearoa can Glow
up and Show up for Rare via community, workplace, and school
events. Other major events include a fundraising Paintvine
Event and a Rare Beer challenge with Fortune Favours in
Wellington.
Sustained social and media content,
collecting data and raising funds will also be a
focus.
Unlike most OECD countries, New
Zealand doesn’t have a national strategy for rare
disorders.
“For policy makers, Rare
Disorders Month is all about doing right by rare and
following through on a commitment to create constitutional
change by developing a rare disorders strategy,” says Ms
Arrowsmith.
According to the 2021 Voice of Rare
Disorders Survey, over half of people living with a rare
disorder took longer than 1 year to get a diagnosis, and for
one in five the time taken to get a diagnosis was over 10
years.
Meanwhile, 55% of respondents indicated their
disorder impacted a lot on their health and everyday life,
and 32% required more than 2 hours per day for
illness-related daily tasks.
“Living with a rare
disorder isn’t rare – the size of the community is
similar to that of a big city like Wellington. If you
don’t have a rare disorder, then you likely know someone
who does. And they need you to Glow Up And Show Up this Rare
Disorders Month,” says RDNZ Chair James
McGorman.
Comprehensive guides detailing how to
#GlowUpShowUp are available for schools, support groups,
workplaces, individuals, healthcare clinics and community
groups on raredisorders.org.nz.
If
you would like to donate to show your support for the rare
disorder community, donations can be made via Givealittle at
givealittle.co.nz/org/rare-disorders-nz.
@RareDisorders_NZ
@RareDisordersNZ
#GlowUpShowUp
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