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.
Chief executive Dr Collette Bromhead said the organisation met with two Labour MPs last week and were told the funding would not be part of this year's Budget.
"The decision to cancel the fund for medicines is a complete U-turn by the Government and has been done without any consultation with the rare disease community,'' she said.
"It leaves these vulnerable patients with no way to access the essential medicines that could extend their life and provide them with a better quality of living.''
During the election, Labour's then Health spokesman David Clark - now the Health Minister - said if Labour became Government, it would give $20 million worth of funds for rare diseases over four years.
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.''
