Today is Rare Disease Day. It is estimated that there are over 300,000 people living with a rare disease or a condition in Ireland today – and this day is a day to raise awareness of these conditions; the people who live with them; and the organisations that support them.
In the lead up to #EpilepsyDay, our colleagues in the International Bureau for Epilepsy launched an online art exhibition for people with epilepsy, focussed on the theme of stigma.
We promoted the exhibition on our website and other channels and encouraged those living with epilepsy in Ireland to make a submission – as we know first hand from our members, volunteers and supporters, just how creative they can be.
Read correspondence from the Irish Epilepsy League in support of our Free Travel Campaign.
Epilepsy Ireland have been in continued contact with the Health Products Regulatory Authority (HPRA) and the manufacturer (Cheplapharm) regarding the ongoing shortage of the anti-seizure medication, Rivotril.
International Epilepsy Day took place earlier this week on the 13th February 2023. We introduced our new campaign highlighting how Time, Safe, Stay needs to become general knowledge amongst the public.
We’d like to thank all those featured in the videos for agreeing to be part of our campaign and allowing themselves to highlight this important message.
For people with epilepsy who are currently being affected by the shortage of the Anti-Seizure Medication Rivotril 0.5mg, we know that many of those affected will be aware that the scheduled return date of the medication has been listed for some time as "early February 2023".
You can see our previous update on this matter by visiting the 'News' section of our website.
Read our media release for #EpilepsyDay 2023 and why it's so important to make Time, Safe, Stay general knowledge.
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.