Rare Disorders NZ offers a central starting point for patients and whānau affected by rare disorders. We help families, patients and healthcare providers navigate the health system and find information and support groups specific to their disorder.
As the only umbrella group representing all people living with a rare disorder in Aotearoa, we provide a strong, unified voice to advocate for public health policy and a future healthcare system that works for those with rare disorders.
We work with the Government, clinicians, researchers and industry to promote diagnosis, treatment, services and research.
We successfully advocated for a national Rare Disorders Strategy and we are now working to ensure changes are implemented in the health system from the Strategy that will make a meaningful difference to the 300,000 Kiwis living with a rare disorder.
