Rare Disorder Framework pushed back
Rare Disorders NZ has been campaigning for the Government to develop a National Rare Disorder Framework. This framework would provide much needed clarity around decision making on rare disorder issues including research funding, improvements in diagnosis and support, and access to treatment.
Rare Disorders NZ is disappointed to receive the below response from the Ministry of Health dismissing our collective call for a rare disorders national framework. We will keep raising awareness for this case and look forward to presenting it to the Health Select Committee next week