Parents whose children developed narcolepsy after receiving the swine flu vaccine Pandemrix met in Brussels today with the EU Health Commissioner Tonio Borg.
Ten representatives of five different countries; Ireland, the UK, Sweden, Finland and Norway, called for pressure to be put on GlaxoSmithKline, the manufacturers of the H1N1 vaccine, to help find better treatment for the condition.
Mary Fitzpatrick, chair of the narcolepsy group SOUND (Sufferers of Unique Narcolepsy Disorder), described this morning's meeting as productive.
She said Commissioner Borg said doing nothing about this was not an option and had committed to looking into funding research for better treatments and to raising awareness across European member states.
Ms Fitzpatrick’s 16-year-old son Conor developed narcolepsy after receiving the vaccine at the age of 12.
Her group is now part of an EU alliance to co-ordinate a Europe-wide approach to treating the condition.
The parents also want an EU inquiry into how the vaccine affected their children.