Rare Disorders NZ provides New Zealand's central starting point for information about rare diseases.
Rare Disorders NZ is the connector hub for people affected by rare disorders and their families to find essential information and links to rare disease support groups.
Rare Disorders NZ is the only umbrella group for rare disorders in New Zealand and provides a strong common voice to advocate for an equitable healthcare system that works for the 300,000 Kiwis with a rare condition - around 6% of the population.
CALL FOR ACTION
Rare Disorders NZ, and the support groups we represent, are calling for acknowledgement and awareness of the common challenges faced by people living with a rare disease, along with a commitment to address these challenges through the development of a New Zealand National Rare Disorder Framework. We want inclusion of patients and clinicians in decision-making processes, consideration of a wider definition of patient quality of life, and impact of rare disorders for carers.
More about us
Rare Disorders NZ is the connector hub & collective voice for people affected by rare disorders and their families. We advocate for an equitable health system that works for the 300,000 Kiwis with a rare condition - around 6% of the population.
Thank you for your support.
Thank you for your ongoing support, we really appreciate it - alone we are rare; together we are strong!