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An event was held at the Warkworth Library on March 25 aimed at raising the profile of people in the Mahurangi community who have a rare disorder and the issues they face.
The term ‘rare disorders’ covers about 6000 uncommon health conditions and an estimated one in 17 New Zealanders live with a rare disorder. About half of those affected are children.
The Angelman Network chairperson Ursula Christel says that the rare disorders represented at the Warkworth gathering included Angelman syndrome, Prader-Willi, Duchenne Muscular Dystrophy, Fabry disease, dystonia, Lennox-Gastaut Syndrome and L1 syndrome.
“The event was a lovely opportunity for local folk who frequently feel marginalised and isolated, to meet up and connect with others who face similar challenges in the health and education systems,” Ursula says.
“Some disorders are clearly visible, while others are not visible at all.
“The event was also about demonstrating that ‘it’s not rare to be rare’.”
The day included temporarily “tattooing’ participants with stickers showing the Glow Up & Show Up circle with the Rare Disorders NZ logo of a kōtare (kingfisher).
Ursula says there are more people and families in the community who are impacted by rare disorders, so the plan is to make the get-together and display an annual event.
“Unlike most OECD countries, New Zealand currently does not have a national strategy for rare disorders.
“The New Zealand health, social and education systems offer no pathways to support those affected by rare disorders. There are no set guidelines for health professionals to refer to when a condition is difficult to diagnose, or how to best support a patient with a rare condition.
“There is also no rare disorder data registry to find the number of others affected by a condition, in fact not even an official definition of what is considered ‘rare’.
“This means people living with a rare disorder are essentially invisible in the health, social and education systems, and face unnecessary hurdles trying to access the support and care they need for a decent quality of life.”
