A new charity has been established to support parents and families affected by Dravet Syndrome and other severe genetic epilepsies.
While epilepsy is not rare, there are rare forms of the condition. These can be extremely difficult to manage and can have an impact on the entire family unit. While we at Epilepsy Ireland aim to provide services and supports to families with all types of epilepsy, we do recognise that for those caring for a loved one with a condition like Dravet Syndrome, their experience can be very different from families living with "general" epilepsies.
Dravet Syndrome Ireland aims to provide peer to peer support for parents who are caring for a child with a rare, genetic epilepsy and will enable parents to share their experience and insights with others in a similar situation.
We wish Dravet Syndrome Ireland every success and we look forward to working with them on our common goals.
You can learn more about Dravet Syndrome Ireland at their website HERE.