A support group established to help the families of children diagnosed with narcolepsy after being vaccinated with the swine flu vaccine, Pandemrix, has joined with similar groups from four other countries to form a new European Alliance.

Narcolepsy is a chronic neurological disorder caused by the brain's inability to regulate sleep/wake cycles normally. There is no cure for it and symptoms can include excessive daytime sleepiness, cataplexy (sudden loss of muscular/postural tone), vivid hallucinations during sleep or after wakening and brief episodes of total paralysis at the beginning or end of sleep.

In September 2011, a group of parents in Ireland who believed their children developed the condition as a result of receiving the Pandemrix vaccine officially launched the support group, SOUND (Sufferers of Unique Narcolepsy Disorder).

Their fears were confirmed in April 2012, when a report by the Health Protection Surveillance Centre (HPSC) found that people who received the Pandemrix vaccine in the 2009/10 swine flu pandemic had a 13-fold higher risk of developing narcolepsy.

These findings were similar to results reported in Sweden and Finland at the time.

SOUND has now joined with support groups from the UK, Finland, Sweden and Norway, to create a new European Alliance. Representatives and legal teams from the five countries attended the alliance's first European conference in Sweden at the weekend.

According to the support groups, around 800 children and young adults in these countries are estimated be affected by narcolepsy as a result of having been administered with this vaccine, however this number is expected to rise significantly.

The main issues that arose from the conference were:
-Each government must ensure adequate supports are in place for those affected
-Adequate financial compensation should be made available to all those affected.

The alliance also insisted that since the vaccine was promoted at EU level, there needs to be ‘active engagement' from the EU. Furthermore, it would like to see increased input from the company that manufactured the drug (GSK), various state authorities and the EU when it comes to research into restoring the health of those affected.

The new alliance is due to meet again in in Oslo in January and then in Dublin next May.