News

The Patients Deserve Better campaign is set to brief TDs and Senators in Dáil Eireann this week to press the need for investment in Ireland’s neurology nurse specialist capacity.

The campaign has been running since last year and is being coordinated by our colleagues in the Neurological Alliance of Ireland.

Ireland currently has a shortfall of 100 neurology nurses and the campaign is seeking to press Government and policymakers to address this shortfall.

If you experience Focal-Onset seizures and/or have been prescribed the medication ONTOZRY® (Cenobamate), we need your help!

Epilepsy Ireland and OACS Ireland met with Department of Health officials yesterday to discuss the establishment of the long-awaited Sodium Valproate inquiry.

There was an open and honest discussion about the delays in establishing the inquiry to date and OACS Ireland conveyed the frustration families are feeling as a result.

This month is Cavernoma Awareness Month.

Cavernoma is a rare condition and a Cavernoma is made up of abnormal blood vessels that looks like a raspberry. Cavernoma present in the brain and/or spinal cord. 

There are a number of serious symptoms that can result from a Cavernoma, including seizures, strokes and haemorrhages. It is estimated that 1 in every 400,000 people are diagnosed with this rare condition every year. 

Alongside our colleagues in OACS Ireland, we will be meeting with the Minister for Health this week to discuss the establishment of the long-awaited Sodium Valproate inquiry.

There has been a step forward on one of our major advocacy campaigns. Read more on what has happened; and what our focus turns to now.

At the beginning of the year, we trialled a new online event on mindfulness for people with epilepsy and family members of a person with epilepsy. The online event is led by our Community Resource Officer, Cliona Molloy.

The establishment of an inquiry into the historical licensing and prescribing of Sodium Valproate continues to be raise in the Dáil.

This week is National Epilepsy Week and working with our colleagues in the UK, we have been exploring the overall theme of #EpilepsyTogether.

Across social media, we have been sharing personal testimonies from people living with epilepsy – sharing their experiences and showing how help, support and understanding from others can be crucial in living with the condition.

Following on from a recent survey regarding the outcomes of childhood epilepsy, the PENNI research team from the University School of Neuropsychology are seeking to further their research by interviewing people who developed epilepsy during childhood.