We are delighted to provide an update to our members and supporters regarding our ongoing advocacy campaign for #EpilepsyWeek. Today we have been raising awareness of the need for the proposed Online Safety & Media Regulation Bill to contain a reference to potentially harmful online content which - in itself - is designed to cause harm. You can read more on that HERE.
The final issue we raise as part of #EpilepsyWeek is concerning an upcoming piece of legislation called the Online Safety & Media Regulation Bill.
The bill aims to protect our citizens from harmful content online which is very welcome however - we believe that a specific reference could be made in the legislation to help protect people with photosensitive epilepsy online and to ensure that a particularly disgusting form of online trolling will be a criminal offence in Ireland.
On the Thursday of #EpilepsyWeek, we focus on an issue which had to addressed before the launch of the Medical Cannabis Access Programme.
As the programme is being prepared for launch, approved products which will be able to be accessed under the programme have been added. To date, 4 products have been approved.
Today as part of #EpilepsyWeek, we are highlighting an issue which specifically impacts on our young people with epilepsy who are sitting their Leaving Certificate.
Currently, if a student with epilepsy has a seizure during their exam and are unable to complete their exam as a result, there is no provision to resit this exam within the same cycle. Instead, students with epilepsy will have to wait a year until the next cycle to retake their exam.
Today as part of National Epilepsy Week, we are shining a light on an issue which continues to impact people with epilepsy across Ireland - access to Free Travel.
Irish public express overwhelming support for two epilepsy advocacy issues
Newly released figures by Epilepsy Ireland have outlined overwhelming public support for action on two key advocacy issues facing people with epilepsy in Ireland.
Today marks the first day of National Epilepsy Week and the first issue we are seeking action on is Sodium Valproate (Epilim).
National Epilepsy Week takes place next week and for the week, we will be highlighting key advocacy issues which are facing people with epilepsy and their families.
Epilepsy Ireland have been in contact with TD's and Senators highlighting some of these issues and asking that they #AdvocateForEpilepsy. The issues we have identified are as follows:
A new programme being led by our colleagues in the RCSI and FutureNeuro has been awarded €4.7m from the Marie Skłodowska-Curie Actions (MSCA) COFUND.
NUIG Health Psychology postgraduate student Caoimhe O'Sullivan is seeking feedback from people with epilepsy as part of her study focussing on disclosure of a non-visible health condition.
Epilepsy is an invisible condition for many and Caoimhe's study will be aiming to quantify how the disclosure of a condition can impact on a person's wider health & well-being.