Irish Times highlights issues surrounding deferred sitting criteria
Read more about one of our key advocacy issues being highlighted in the Irish Times.
News
New study published on neurodevelopmental outcomes on prenatal exposure to AEDs
The largest study of its kind has published its results and there is important information for women with epilepsy to be aware of.
Issues surrounding deferred examinations raised in the Dáil
Read about the latest Dáil debate on this important ongoing Advocacy campaign.
ONTOZRY® Update - Epilepsy Ireland make submission to NCPE supporting reimbursement of the drug
Epilepsy Ireland have made a submission to the National Centre for Pharmacoeconomics (NCPE) supporting the reimbursement of ONTOZRY® (Cenobamate), in Ireland.
Today is Dravet Syndrome Awareness Day!
Today is Dravet Syndrome awareness day. While epilepsy is not rare, there are rare subsets of the condition. Dravet Syndrome is one such type of rare epilepsy.
Dravet Syndrome (DS) is a severe type of epilepsy characterised by often prolonged (5+ minute) seizures that usually begin in the first year of life. It affects one in 20,000 – 40,000 people worldwide. It is a genetic condition, often caused by SCN1A gene mutations, most of which are de novo.
New Beyoncé Video – Photosensitive Warning
There are a number of serious sequences within the new Beyoncé video which could be triggering to people with photosensitive epileps.
WHO adopt Global Action Plan on Epilepsy and other Neurological Conditions
A welcome development recently at the recent World Health Assembly. Read more about what has been agreed.
'Patients Deserve Better' to brief TDs & Senators this week.
The Patients Deserve Better campaign is set to brief TDs and Senators in Dáil Eireann this week to press the need for investment in Ireland’s neurology nurse specialist capacity.
The campaign has been running since last year and is being coordinated by our colleagues in the Neurological Alliance of Ireland.
Ireland currently has a shortfall of 100 neurology nurses and the campaign is seeking to press Government and policymakers to address this shortfall.
Can you help support reimbursement for a new Anti-epileptic drug?
If you experience Focal-Onset seizures and/or have been prescribed the medication ONTOZRY® (Cenobamate), we need your help!
Sodium Valproate Inquiry Update
Epilepsy Ireland and OACS Ireland met with Department of Health officials yesterday to discuss the establishment of the long-awaited Sodium Valproate inquiry.
There was an open and honest discussion about the delays in establishing the inquiry to date and OACS Ireland conveyed the frustration families are feeling as a result.