Rare disorder experts from around the world, including
New Zealand, are convening for a virtual roundtable today to
discuss the dire situation for people living with a rare
disorder in New Zealand.
New Zealand lags behind most
other comparable OECD countries in supporting persons living
with a rare disorder, offering no planned pathways for
clinical care and little guidance for health professionals
on how to manage a patient with a rare or undiagnosed
disorder.
Rare Disorders NZ, in collaboration with
Costello Medical UK, is hosting the one-day roundtable to
provide a platform for rare disorder advocates, healthcare
professionals and researchers to share insights from their
own experiences with rare conditions, either personally or
professionally, and to discuss opportunities for improving
the current situation in New Zealand for individuals with a
rare disorder and their whānau.
The roundtable could
not be more urgent, as persons affected by a rare disorder
in New Zealand continue to disproportionately suffer poor
health outcomes due to the lack of prioritisation given to
the needs of this population group that collectively is
similar in size to the population of Wellington.
“We
have a health system in New Zealand that has for too long
failed people living with a rare disorder, and we are deeply
concerned that despite the significant overhaul of the
health system this year, the Pae Ora Bill did not include
any legislative change for rare disorders. Bringing together
experts within this field is a really exciting opportunity
to identify solutions to improve health outcomes for the
rare disorder community in New Zealand,” says Michelle
Arrowsmith, Chief Executive of Rare Disorders
NZ.
While Minister of Health Andrew Little in June
announced he was committed to the development of a Strategy
for Rare Disorders, the rare disorder community in New
Zealand is understandably skeptical about how much of a
difference it will make to their health and wellbeing, given
the strategy was not included in the Pae Ora
legislation.
“We’re not interested in tokenism, we
want to see true co-design with the rare community and we
will be holding the Government and their health agencies to
account to ensure they truly are committed to delivering
meaningful change,” says Ms Arrowsmith.
“We will
be collating the ideas brought forward in today’s
roundtable and presenting them to Government and their
officials to ensure the strategy is fit for purpose and
makes a difference to those affected by rare
disorders.”
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