Australian Cystinosis Support Group

Cystinosis

Email: australiancystinosisfoundation@gmail.com

More information can be found at http://www.cystinosis.com.au/

Our Collective

Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 150 disorder-specific support groups.

Our work is informed by the issues important to our collective. We work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.

Australian Cystinosis Support Group

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Rare News

RDNZ discusses new attendance rules with officials

Inaugural Clinical Advisory Panel announced

Te Whatu Ora reset standing in the way of people with rare disorders getting the care they need

Pharmac’s early call for applications for rare disorder medicines welcomed

RDNZ seeks clarification on new attendance rules

Biennial Support Group Lead Hui

Rare disorder community celebrates Aotearoa’s first Rare Disorders Strategy

RDNZ invited to release of Letter of Expectation to Pharmac

Our Collective