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Rare News

Biennial Support Group Lead Hui

16 Aug 2024
Rare disorder community celebrates Aotearoa’s first Rare Disorders Strategy

25 Jul 2024
RDNZ invited to release of Letter of Expectation to Pharmac

22 Jul 2024
Patient advocates meet with Labour to discuss medicine access

21 Jul 2024
Briefing on medicine access issues for rare sent to new Pharmac Chair

19 Jul 2024
Rare disorder patients desperate to know if their medicines will be funded in new Pharmac budget allocation

25 Jun 2024
Call for Expressions of Interest in new Rare Disorders Research Network Development Group

18 Jun 2024
Call for Expressions of Interest in new Clinical Advisory Panel

18 Jun 2024

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, and we work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.