The future of the organisation for rare disorders looks bleak as there's uncertainty around its government funding.

More than 330,000 New Zealanders are thought to have a rare disease.

If the funding stops, the Organisation for Rare Disorders will be forced to close.

The group is calling for a $120,000 to keep their doors open.

The mother of a child with a rare disease Anna Sutherland, told Kate Hawkesby she doesn't understand why the one group trying to help parents like her, is being dismantled.

"We're just put on the back burner and it almost feels like we are just waiting for our child to pass, so that we stop nagging everyone."

LISTEN ABOVE AS ANNA SUTHERLAND SPEAKS TO KATE HAWKESBY