Final Report Summary - ERFIP2013 (2013 Epilepsy Research Forum)
Executive Summary:
Summary
The European Forum on Epilepsy Research (ERF2013) took place in Dublin from the 26th – 29th May 2013. It was designed to provide a platform on how to improve the lives of persons with epilepsy in Europe by influencing the future political agenda of the EU. The forum’s focus was to listen to the researchers and citizens of Europe involved in epilepsy-related issues either as patients or as healthcare providers. As an output, the ERF2013 defined objectives and milestones for the epilepsy community (1) how to strengthen epilepsy research, (2) how to reduce the treatment gap, and (3) how to reduce the burden and stigma of epilepsy.
Presentations of speakers have been put on the website for the project (see link below) as well as photos of the event and, in due course, the final report of the Forum.
http://www.epilepsyadvocacyeurope.org/european-forum-on-epilepsy-research.152.html
Project Context and Objectives:
The European Forum on Epilepsy Research (ERF2013) was an initiative of Epilepsy Advocacy Europe (EAE), a collaborative joint task force of the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) (http://epilepsyadvocacyeurope.org). The Forum was co-funded by the European Commission’s 7th Framework Programme and hosted in conjunction with the Irish Presidency of the Council of the European Union during the European Month of the Brain. A total of 270 participants from 57 countries, including each of the 27 EU Member States, were present at the Forum. The ERF2013 elaborated further the contents of the Written Declaration on Epilepsy, which had been approved by the European Parliament in 2011 with a large majority of votes (http://www.europarl.europa.eu/sides/getDoc.do?pubRef=-//EP//NONSGML+WDECL+P7-DCL-2011-0022+0+DOC+PDF+V0//EN&language=EN; Baulac et al., 2012).
The main focus of the Forum had three concepts, each separate but inextricably intertwined. Firstly, possibilities were explored as to how the stigma and social burden associated with epilepsy could be reduced through targeted initiatives at EU, national and regional levels. Secondly, there was a specific focus on access to optimal standards of care, as well as discussion surrounding the appropriate response to epilepsy care in Europe. Thirdly, a clear message was delivered to politicians and policy makers that there is a need for further funding in epilepsy research within Horizon 2020. The topics specifically discussed, as those requiring extra resources, were:
• Epilepsy in the Developing Brain
• New Targets for Innovative Diagnostics and Treatment of Epilepsy
• What is required for Prevention and Cure of Epilepsy?
• Epilepsy and Co-morbidities – Special Focus on Ageing and Mental Health
Project Results:
N/A
Potential Impact:
Target Audience
The people targeted to become aware of the forum and encouraged to attend came from many disciplines and perspectives to include the following:
• EU Health Research National Contact Points
• EU Commission
• International League Against Epilepsy (ILAE) member associations across Europe
• International Bureau for Epilepsy (IBE) member associations across Europe
• Researchers
• Clinicians
• National Policy Makers
• MEPs
• Persons with Epilepsy
Communications
Communication in the lead up to the forum and after the event was on several fronts:
Website:
• Visits from March 2013 to July 2013 - 5,452
• Page views: 18,551
• Top 10 countries Ireland, UK, USA, Belgium, Germany, Italy, Portugal, Russia, France, Spain
Newsletters:
• 6 newsletters between February and May 2013
• 64,638 email newsletters sent
• 18.9% average open rate
• 12,217 emails opened
Email invitations:
• 3 rounds, to National Contact Points and EU Commission
• 5 rounds, to ILAE and IBE members
2 page Flyer:
• Distributed to 736 MEPs
Invitation booklet (24 pages):
• 9,000 copies distributed
Press releases:
• 5 Press releases issued:
• Tailored for EU Media
• Tailored for Irish Media
2 Diary Notices:
• Tailored for EU Media
• Tailored for Irish Media
Adverts:
• Epilepsy Journals
• Online banners
• Promotional video created
Databases:
• Medical press database
• EU mainstream and medical database
• Irish Medical and mainstream database
• British medical
• EU radio and TV database
Photo Call:
• Tailored for Irish Media
• Pictures available to EU media
Social Media:
• Facebook
• Twitter
Face to Face Meetings:
• 14 meetings, with pharmaceutical industry
Phone Calls:
• 25 calls, to ILAE member associations in Europe
Final Programme (32 pages):
• Distributed to all Forum attendees
Post Forum Survey:
• Sent to all attendees
• 48.5% response rate, from 33 countries
List of Websites:
www.epilepsyresearcheurope.org/european-forum-on-epilepsy-research.152.html
Presentations of speakers have been put on the website for the project (see link below) as well as photos of the event and, in due course, the final report of the Forum.
www.epilepsyadvocacyeurope.org/european-forum-on-epilepsy-research.152.html
Summary
The European Forum on Epilepsy Research (ERF2013) took place in Dublin from the 26th – 29th May 2013. It was designed to provide a platform on how to improve the lives of persons with epilepsy in Europe by influencing the future political agenda of the EU. The forum’s focus was to listen to the researchers and citizens of Europe involved in epilepsy-related issues either as patients or as healthcare providers. As an output, the ERF2013 defined objectives and milestones for the epilepsy community (1) how to strengthen epilepsy research, (2) how to reduce the treatment gap, and (3) how to reduce the burden and stigma of epilepsy.
Presentations of speakers have been put on the website for the project (see link below) as well as photos of the event and, in due course, the final report of the Forum.
http://www.epilepsyadvocacyeurope.org/european-forum-on-epilepsy-research.152.html
Project Context and Objectives:
The European Forum on Epilepsy Research (ERF2013) was an initiative of Epilepsy Advocacy Europe (EAE), a collaborative joint task force of the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) (http://epilepsyadvocacyeurope.org). The Forum was co-funded by the European Commission’s 7th Framework Programme and hosted in conjunction with the Irish Presidency of the Council of the European Union during the European Month of the Brain. A total of 270 participants from 57 countries, including each of the 27 EU Member States, were present at the Forum. The ERF2013 elaborated further the contents of the Written Declaration on Epilepsy, which had been approved by the European Parliament in 2011 with a large majority of votes (http://www.europarl.europa.eu/sides/getDoc.do?pubRef=-//EP//NONSGML+WDECL+P7-DCL-2011-0022+0+DOC+PDF+V0//EN&language=EN; Baulac et al., 2012).
The main focus of the Forum had three concepts, each separate but inextricably intertwined. Firstly, possibilities were explored as to how the stigma and social burden associated with epilepsy could be reduced through targeted initiatives at EU, national and regional levels. Secondly, there was a specific focus on access to optimal standards of care, as well as discussion surrounding the appropriate response to epilepsy care in Europe. Thirdly, a clear message was delivered to politicians and policy makers that there is a need for further funding in epilepsy research within Horizon 2020. The topics specifically discussed, as those requiring extra resources, were:
• Epilepsy in the Developing Brain
• New Targets for Innovative Diagnostics and Treatment of Epilepsy
• What is required for Prevention and Cure of Epilepsy?
• Epilepsy and Co-morbidities – Special Focus on Ageing and Mental Health
Project Results:
N/A
Potential Impact:
Target Audience
The people targeted to become aware of the forum and encouraged to attend came from many disciplines and perspectives to include the following:
• EU Health Research National Contact Points
• EU Commission
• International League Against Epilepsy (ILAE) member associations across Europe
• International Bureau for Epilepsy (IBE) member associations across Europe
• Researchers
• Clinicians
• National Policy Makers
• MEPs
• Persons with Epilepsy
Communications
Communication in the lead up to the forum and after the event was on several fronts:
Website:
• Visits from March 2013 to July 2013 - 5,452
• Page views: 18,551
• Top 10 countries Ireland, UK, USA, Belgium, Germany, Italy, Portugal, Russia, France, Spain
Newsletters:
• 6 newsletters between February and May 2013
• 64,638 email newsletters sent
• 18.9% average open rate
• 12,217 emails opened
Email invitations:
• 3 rounds, to National Contact Points and EU Commission
• 5 rounds, to ILAE and IBE members
2 page Flyer:
• Distributed to 736 MEPs
Invitation booklet (24 pages):
• 9,000 copies distributed
Press releases:
• 5 Press releases issued:
• Tailored for EU Media
• Tailored for Irish Media
2 Diary Notices:
• Tailored for EU Media
• Tailored for Irish Media
Adverts:
• Epilepsy Journals
• Online banners
• Promotional video created
Databases:
• Medical press database
• EU mainstream and medical database
• Irish Medical and mainstream database
• British medical
• EU radio and TV database
Photo Call:
• Tailored for Irish Media
• Pictures available to EU media
Social Media:
Face to Face Meetings:
• 14 meetings, with pharmaceutical industry
Phone Calls:
• 25 calls, to ILAE member associations in Europe
Final Programme (32 pages):
• Distributed to all Forum attendees
Post Forum Survey:
• Sent to all attendees
• 48.5% response rate, from 33 countries
List of Websites:
www.epilepsyresearcheurope.org/european-forum-on-epilepsy-research.152.html
Presentations of speakers have been put on the website for the project (see link below) as well as photos of the event and, in due course, the final report of the Forum.
www.epilepsyadvocacyeurope.org/european-forum-on-epilepsy-research.152.html