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.
There are a number of serious sequences within the new Beyoncé video which could be triggering to people with photosensitive epileps.
A welcome development recently at the recent World Health Assembly. Read more about what has been agreed.
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.
If you experience Focal-Onset seizures and/or have been prescribed the medication ONTOZRY® (Cenobamate), we need your help!
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.
Alongside our colleagues in OACS Ireland, we will be meeting with the Minister for Health this week to discuss the establishment of the long-awaited Sodium Valproate inquiry.
There has been a step forward on one of our major advocacy campaigns. Read more on what has happened; and what our focus turns to now.
At the beginning of the year, we trialled a new online event on mindfulness for people with epilepsy and family members of a person with epilepsy. The online event is led by our Community Resource Officer, Cliona Molloy.
The establishment of an inquiry into the historical licensing and prescribing of Sodium Valproate continues to be raise in the Dáil.