News

A new exhibition in the Irish Museum of Modern Art that combines a lived experience of epilepsy; cutting edge science; and music is set to be unveiled this weekend.

At the centre of this exhibition is Debbie Boss. Debbie was diagnosed with a brain tumour in 2014. Although Debbie’s surgery to remove the tumour was successful, she subsequently developed epilepsy. The condition has had a considerable impact on Debbie’s day to day life ever since.

If you are a person living with Tuberous Sclerosis Complex (TSC) or caring for a person with TSC, PHD Researcher at Trinity College Dublin, Mary Vasseghi, would like to hear from you.

As part of her PHD research, Mary is seeking to learn more about the lived experiences of people with TSC in Ireland – both in terms of living with the condition and in terms of their healthcare needs.

Further to our recent news item regarding issues surrounding the supply of Rivotril in Ireland, we have received a further update from the Health Products Regulatory Authority. 

The HPRA have confirmed that delivery of the medication is expected to arrive in Ireland on the 5th October. This will then need to be distributed across the country. However, with supply entering country, this should address the issues which have been experienced recently. 

We were delighted to be recently informed that our 2022 International Epilepsy Day campaign has been nominated & shortlisted for a Shark Award.

These awards recognise advertising/digital campaigns that have made a significant impact and the work of the digital agencies/production companies involved in making these campaign a reality.

Our campaign around the eligibility criteria for the deferred sitting of Leaving Cert exams continues to be raised in the Oireachtas.

We have released new figures on the public awareness of epilepsy.

We have published our new Strategic Plan following an extensive stakeholder engagement process.

Epilepsy Ireland are aware that there are currently supply issues being experienced with the Anti-Seizure medication Rivotril.  

It is understood that a manufacturing issue is currently disrupting the supply of the medication, creating a shortage for some people on the drug. This issue is expected to be resolved by the end of the month as per information provided by the Health Products Regulatory Authority.

Help support our longstanding campaign aimed at improving access to the Free Travel scheme for people with epilepsy.

We'll be tuning into RTÉ's Ultimate Hell Week on Wednesday!