News

The National Centre for Pharmacoeconomics (NCPE) have updated Epilepsy Ireland that they have issued a positive recommendation regarding the potential reimbursement of the anti-seizure medication, Cenobamate.

The medication has been indicated for use in adults living with focal-onset seizures and has posted positive clinical trial results. Epilepsy Ireland made a submission to the NCPE in July supporting reimbursement of the medication.

At a time when we have experienced record demand for our services, we have also seen a 50% drop in fundraised income. We need your support this Rose Week.

The Annual General Meeting of Brainwave, The Irish Epilepsy Association (trading as Epilepsy Ireland) for the year ending 31.12.21 was held on the 29^th September 2022 via zoom.

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.