A network of families caring for children with foetal alcohol syndrome wants it to be recognised as a disability, and wants the Government to take action.
The national organisation, FASD Care Action Network, has come up with 22 recommendations.
They include putting warning labels on alcohol, and enabling parents and carers to qualify for financial support and respite care.
The syndrome, involving permanent physical and mental damage, occurs as a result of alcohol consumption during pregnancy.
The FASD network estimates that 3000 or more babies could be born with foetal alcohol syndrome every year.
But they admit it was difficult to know for sure, because they said no reliable data had been gathered and there was no comprehensive government plan of action for foetal alcohol syndrome.
A neuropsychologist who worked on the recommendations, Valerie McGinn said the condition must be recognised as a disability to open up options for national action and funding.
The Ministry of Health says the Government has committed to an action plan to reduce harm from foetal alcohol syndrome disorder.
Part of that review is looking at warning labels on alcohol containers.
The ministry said in June 2014 the Australia and New Zealand Ministerial Forum on Food Regulation, agreed to the continuation of voluntary pregnancy warning labelling of alcohol containers for another two years.
The ministry also said it had no data on the number of people in the country currently suffering the effects of foetal alcohol syndrome disorder.