SOUND (Sufferers Of Unique Narcolepsy Disorder) was set up by parents of children who developed Narcolepsy after receiving the 2009/2010 H1N1 Swine Flu vaccine Pandemrix.
The support group and registered charity continues to be run by a small voluntary team of parents of children with Narcolepsy and young adult Narcolepsy sufferers.
SOUND’s objectives are:
- To support parents of children that have been affected by Narcolepsy following the Pandemrix vaccine
- To facilitate meetings between families for information sharing and peer support of the children
- To lobby the Government and HSE to:
- Provide consistent and appropriate life long support to those affected with Narcolepsy as a result of the vaccine Pandemrix
- Effectively raise knowledge within the medical profession in Ireland such that diagnosis is quick and accessible
- To raise awareness throughout the general population of Ireland such that all those affected can be helped
- Ensure that those affected are not disadvantaged/discriminated against as they start their careers