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Training For Success Course Manager Maire Tansey recognised by EFNA advocacy awards

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We are delighted to announce that our Training For Success Course Manager, Maire Tansey, has been acknowledged in the European Federation of Neurology Associations Advocacy (EFNA) Advocacy Awards.

The biannual awards recognise the contribution of an individual or group to the development and promotion of advocacy for people with neurological disorders in Europe. The topic this year was ‘Action against stigma’.

NAI Launch report on resourcing of Neurological Services

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To mark Brain Awareness Week 2021, our colleagues in the Neurological Alliance of Ireland(NAI) have launched a report on the resourcing of neurology services in Ireland. 

The report is an update to a similar paper published 5 years ago and offers an update on how access to services currently stand. Unfortunately, the report notes that there is significant progress to be made when it comes to improving access to neurological services in Ireland.

Epidyolex Update

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The National Centre for Pharmacoeconomics (NCPE) have issued their recommendation to the HSE regarding the reimbursement of Epidyolex.

Epidyolex is a cannabidiol (CBD) medication which through clinical trials has been shown to have a positive impact in the treatment of two rare epilepsies – namely Lennox Gastaut Syndrome & Dravet Syndrome.

New study highlights presentations of COVID-19 in people with epilepsy.

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A new study from Iran which focussed on the impact of COVID-19 in patients with epilepsy has recently been published in the medical journal Acta Neurologica Scandinavica.

The findings present some welcome news, reiterating that there is no evidence that people with epilepsy are more susceptible or more adversely affected by COVID-19. However, the researchers also found that COVID-19 may present differently in people with epilepsy compared with people without epilepsy.

Wexford County Council pass motion supporting key Epilepsy Ireland advocacy issues.

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In their latest meeting, members of Wexford County Council passed a motion supporting the issue of Free Travel for People with Epilepsy and for Reasonable Accommodations for students with epilepsy who may have a seizure during state examinations.

The passing of the motion follows a similar decision from Louth County Council earlier this year. The motion in Wexford was submitted by Cllr. George Lawlor. 

Epilepsy Ireland to fund new study focused on issue of Driving Restrictions

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We are delighted to announce that we have approved research funding for a new study which will investigate the societal impact for people with epilepsy of losing a driving license. The research will take place at FutureNeuro, led by Prof. Norman Delanty; Consultant Neurologist at Beaumont Hospital and Registrar Dr. Stephen Klaus.

FINTEPLA (Fenfluramine) approved by EU Commission for use in Dravet Syndrome

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The European Commission has approved the use of a new drug as an add-on therapy for the treatment of Dravet Syndrome in patients 2 years and older.

The Commission’s approval of FINTEPLA (Fenfluramine) will mean that the drug’s manufacturers can now apply to European member states regulatory authorities to make the drug available and/or reimbursed  in that country.

#EpilepsyDay - Epilepsy Ireland release key findings from survey of General Public.

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As part of the lead up to #EpilepsyDay, we commissioned a survey of 1,000 members of the general public on their understanding, knowledge & attitudes towards epilepsy.

The survey was conducted online between the 13th - 17th January and received the full 1,000 responses. 

The key findings of our survey are as follows: