As we await a final report on our proposals, improved access to the Free Travel scheme for people with epilepsy was recently raised in the Oireachtas Committee on Social Protection.
A new European wide project is seeking to learn more about the experiences of people with epilepsy in education and employment.
The project is called EpilepsyPOWER and with the information gathered as part of their research, it is aiming to develop tools and training for businesses and higher education institutions to help them better support the inclusion of people with epilepsy.
Following a meeting with the State Exams Commission in recent weeks, Epilepsy Ireland can confirm that we will also be meeting with the Minister for Education this week to discuss the eligibility criteria for the deferred sitting of the Leaving Cert examinations. This meeting was originally supposed to take place in November but was rescheduled.
To coincide with International Epilepsy Day, our colleagues in the International Bureau for Epilepsy(IBE) are hosting an online art exhibition centred on the theme of stigma associated with epilepsy.
We know that stigma and misconceptions around epilepsy are still common and can have a negative impact on the lives of those living with the condition – which is why days like International Epilepsy Day are so important in our calendar to help increase understanding and awareness.
A very interesting study from University College Cork recently published - which could lead to technology for seizure prediction!
We were delighted to hear that the outstanding team at the Cycle for Shane reached their fundraising goal at the turn of the year – an incredible way to begin 2023 and a huge acknowledgement of their extraordinary efforts in support of Epilepsy Ireland and SUDEP Action last year.
Read how we continued our journey towards a society where no person's life is limited by epilepsy in 2022.
Our colleagues in the International Consortium for Health Outcomes Measurement (ICHOM)– an international non-profit organisation that aims to improve global healthcare – is seeking feedback from adults living with epilepsy in Ireland as part of their continuing project on developing a minimum set of outcomes for people living with epilepsy.
We would like to inform people with epilepsy and their family members that there is currently a supply issue being experienced with the Ant-Seizure Medication, Lyrica (Pregabalin) .
According to the Health Products Regulatory Authority (HPRA), the shortage is due to shipping delays and is affecting supply of the 50mg, 75mg and 100mg capsules. The shortage was first listed at the end of November and is expected to be resolved by the end of the month.
Further to our recent notice on the supply on of Epanutin (you can see our original notice by visiting the 'News' section of our website), we have received a response from the Health Products Regulatory Authority (HPRA) regarding this shortage. You can see this reply below: