Marfan New Zealand and related Connective Tissue Disorders

Marfan Syndrome; Connective Tissue Disorders

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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.

Marfan New Zealand and related Connective Tissue Disorders

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Rare News

Major milestone reached for Strategy implementation

Rare Disorders NZ launches new podcast

Rare Disorders NZ Chair forced to become another medical refugee

RDNZ endorses letter to Minister of Health on patient safety

Calling all Kiwis with a rare health condition – your voice is needed

RDNZ urges Government to include Rare Disorders Strategy in Pae Ora legislation

RDNZ CE appointed to new Pharmac Consumer and Patient Working Group

Advancing rare disorders research connections

Our Collective