Fair for Rare NZ - Town Hall Meeting
Meet candidates from each of the political parties and ask your questions, in person, about how they'll make NZ more 'fair for rare'.
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WEBINAR: Rare disorder support group advocacy training
"Alone we are rare, together we are strong" OVERVIEW This advocacy webinar will: - give your support group tools to guide your advocacy for systemic change; - empower your support group to understand how to build coalitions and gain support for the collective Fair for Rare NZ campaign; - cover best practice for developing your own advocacy strategy; - include case studies of success and failure: what works well, where it can go wrong and why.
Patient resources
Here are some resources created for people living with a rare disorder and their family by Rare Disorders NZ and our expert advisers.
New strategy to accelerate diagnosis and improve treatment of rare diseases in the UK
The new framework will raise awareness of rare diseases, speed up diagnosis and improve care and treatment.
logos
Carol Gernhoefer
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Evie
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ministry of health logo
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Evie2
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Evie2 edited
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