Dr Collette BromheadThe country's biggest charity helping patients dealing with rare disorders has slammed the Government for going back on a pre-election promise to pledge $20 million for rare diseases. The NZ Organisation for Rare Disorders (NZORD) says it is stunned a pledge to establish a separate fund that would allow rare disease patients to access life-saving medicines would not go ahead. There are around 377,000 patients and families in New Zealand who live with a rare or life-threatening disease. NZORD has also been told that its contract will be under review - something it is calling a "double blow''. "We are strongly advocating to the Government that NZORD's funding contract needs to continue so that [we] can provide vital services to patients.''

Source: Otago Daily Times February 21, 2018 20:26 UTC