Highlighting rare disorders
New Zealand’s rare disorders organisation is advocating a national framework be established to support its cause.
A recent virtual roundtable of international experts found that New Zealand lags behind most other comparable OECD countries in supporting persons living with a rare disorder.
New Zealand offers no planned pathways for clinical care, and little guidance for health professionals about how to manage a patient with a rare or undiagnosed disorder, they found.
Rare Disorders NZ, in collaboration with Costello Medical UK, hosted the roundtable to provide a platform for rare disorder advocates, healthcare professionals, and researchers, to share insights from their own experiences with rare conditions, either personally or professionally.
Participants also discussed opportunities for improving the current situation in New Zealand for individuals with a rare disorder, and their whānau.
About Rare Disorders NZ RDNZ is the national organisation supporting all New Zealanders who live with a rare condition, and the people who care for them.
It works the Government, clinicians, researchers, and industry, to promote diagnosis, treatment, services, and research.
