SOUND represents around 80 people who have the condition and who got the drug Pandemrix, under the national pandemic vaccination scheme in late 2009 and 2010.
The organisation said today that it had worked hard to ensure that the case for funding the €1.6m centre at St James's was clear and the families are very disappointed it will not be fully operational this year.
The Health Service Executive says no funding was allocated in its national service plan for 2017 for the adult service at St James's.
It says that "where extra resources are made available", the HSE along with St James's will proceed to develop the adult service.
The HSE says that a proposal will be included in the estimates for 2018 and planning for this will start in early June.
An Irish study found a 13-fold higher risk of narcolepsy in children or adolescents given the pandemic vaccine compared with unvaccinated people.
To date, health authorities in Ireland have received 81 reports, with clinical information, confirming a diagnosis of narcolepsy, in individuals vaccinated against the H1N1 virus.
There are 80 reports relating to those vaccinated with the drug Pandemrix and one case relating to vaccination with the drug Celvapan.
The State has not conceded a direct legal link between those vaccinated and the development of narcolepsy.
But ex-gratia health supports and discretionary medical cards have been provided for those affected.
Minister for Health, Simon Harris has said that work is under way on the proposed centre at St James's, which will cater for all people diagnosed with narcolepsy, including those diagnosed after receiving pandemic influenza vaccine.
Mr Harris said that he looks forward to meeting with the SOUND group in the coming weeks.
He said that total funding of €231,972 was provided over the past two years for narcolepsy and related sleep disorders at St James's Hospital.
The funding has been utilised to support a narcolepsy advanced nurse practitioner, consultant sessions, and research and sleep studies.