Rare Disorders NZ: December update

"I want to raise awareness in New Zealand as not many specialists have even heard of it."

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Here are some resources created for people living with a rare disorder and their family by Rare Disorders NZ and our expert advisers.

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NZ RESPIRATORY CONFERENCE

Rare Disorders NZ hosted a stand at the New Zealand Respiratory Conference at Te Papa last month.

Our Chief Executive Lisa Foster and Relationship Manager Kim MCGuinness attended the conference on behalf of the 34 rare conditions in our collective with respiratory issues, as well as promoting our Parliamentary Petition for a National Rare Disorder Framework. Examples of rare disorders that have respiratory issues include Ehlers-Danlos Syndromes, Cystic Fibrosis and some chromosome disorders.

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