21 February 2018 - The country's biggest charity helping people dealing with rare disorders is upset the Government has gone back on what it says was a multi-million dollar pre-election pledge for rare diseases.

The NZ Organisation for Rare Disorders says it is stunned a $20 million pledge to establish a separate fund that would allow rare disease patients to access life-saving medicines would not go ahead.

However, the now Government says no such amount or policy was ever announced and that money would still be made available for people with rare disorders in other ways such as a pilot programme run by PHARMAC.

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