Skip to content

NEW WEBSITE

Our new website is now located:

 

www.epilepsyadvocacyeurope.org

 

 

 

European Forum on Epilepsy Research – Speakers’ Presentations

heading

European Forum on Epilepsy Research – Speakers’ Presentations

Burden and Stigma of Epilepsy – Christine Linehan

Burden and Stigma of Epilepsy – Hanneke de Boer

Burden and Stigma of Epilepsy – Ley Sander

Burden & Stigma of Epilepsy – Mike Glynn

How to Increase Support and Access Funding Opportunites – Anna Pytko

How to Increase Support and Access Funding Opportunites – Nacer Boubenna

How to Increase Support and Access Funding Opportunities – Emilio Perucca

How to Increase Support and Access Funding Opportunities – Janet Mifsud

How to Increase Support and Access Funding Opportunities – Joana Camilo

How to Increase Support and Access Funding Opportunities – Kay Duggan-Walls

Standards of Care – Antonio Gil-Nagel

Standards of Care – Christian Elger

Standards of Care – Norman Delanty

Standards of Care – Péter Halász

Epilepsy in the Developing Brain – Alfonso Represa

Epilepsy in the Developing Brain – Catherine Chiron

Epilepsy in the Developing Brain – Heiko Luhmann

Epilepsy in the Developing Brain – Maria Thom

Epilepsy in the Developing Brain – Patrick Van Bogaert

Epilepsy in the Developing Brain – Renzo Guerrini

Innovative Diagnostics & Treatments – Henrik Klitgaard

Innovative Diagnostics & Treatments – David Henshall

Innovative Diagnostics & Treatments – Margitta Seeck

Innovative Diagnostics & Treatments – Merab Kokaia

Innovative Diagnostics&  Treatments – Annamaria Vezzani

Innovative Diagnostics & Treatments – Michel Baulac

Prevention and Cure – Asla Pitkänen & Torbjörn Tomson

Prevention & Cure – Dieter Schmidt

Prevention & Cure – Holger Lerche

Prevention & Cure – Dimitri Kullmann

Prevention & Cure – Ettore Beghi

Think Big – No Seizures No Epilepsy – Emmanuel Martin

Think Big – No Seizures No Epilepsy – Philippe Cupers

Think Big – No Seizures No Epilepsy – Toshal Patel

Think Big – No Seizures No Epilepsy – Vicky Whittemore

Epilepsy & Co-Morbidities – Ageing & Mental Health – Andrey Mazarati

Epilepsy & Co-Morbidities – Ageing & Mental Health – Christoph Helmstaedter

Epilepsy & Co-Morbidities – Ageing & Mental Health – Gus Baker

Epilepsy & Co-Morbidities – Ageing & Mental Health – Philippe Ryvlin

European Epilepsy Day in the EU Parliament 2013

EED 2013

PHOTOGRAPHED AT EED 2013 IN THE EUROPEAN PARLIAMENT (left-right): Jim Higgins MEP, Francisco José Millán Mon MEP, Filip Kaczmarek MEP, Gay Mitchell MEP, Anna Záborská MEP, Veronika Mitykó, Pat The Cope Gallagher MEP, Sean Kelly MEP, Kristzina Danczik, Dr. Judit Jerney M.D., President of the Hungarian Epilepsy League (Hungarian Chapter of the International League Against Epilepsy) and Ann Little Executive Director IBE (International Bureau for Epilepsy)

18th – February 2013: European Epilepsy Day was celebrated in the European Parliament through a series of events organised by the IBE/ILAE Joint Task Force – Epilepsy Advocacy Europe. Representing the Task Force in Brussels were Mike Glynn, Emilio Perucca, Janet Mifsud and Ann Little.

Stand Up For Epilepsy Photography

Throughout the week, an exhibition of 45 images from the Stand Up For Epilepsy Photography project was mounted in a prominent position in the parliament. The images, from countries all over the world, feature famous international and Olympic sports people, including Usain Bolt, photographed with people with epilepsy – some of whom are sports people in their own right.

Prevalence and Costs of Epilepsy

epilpeline

On Tuesday afternoon, an important workshop on Prevalence and Costs of Epilepsy was hosted by Gay Mitchell, MEP, with speakers Torbjörn Tomson (Sweden) and Christine Linehan (Ireland). The workshop highlighted the wide variance in past surveys on epilepsy prevalence and the need for pan European research to establish accurate figures so that the true cost of epilepsy can be determined.

Official Launch

Gay Mitchell also hosted an evening reception for the official launch of the Stand Up for Epilepsy exhibition, which featured a gymnastic display by a young Hungarian girl, 12-year old Veronika Mitykó. Veronika has childhood epilepsy and, despite the fact that her epilepsy is fully controlled and, despite the fact that her medical consultant has certified that she is fit to perform, she has been denied the right to complete (and to practice her sport) in Hungary. We hope that Veronika’s presence in Brussels will help to end this unfairness.

More than 100 people attended the event, including 20 MEPs and a large number of assistants. The MEPs included Gay Mitchell MEP (Ireland), Sean Kelly MEP (Ireland), Mairead McGuinness MEP (Ireland), Jim Higgins MEP (Ireland), Pat The Cope Gallagher MEP (Ireland), Liam Aylward MEP (Ireland), Emer Costello MEP (Ireland), Diane Dodds MEP (Northern Ireland), Fiona Hall MEP (UK), Filip Kaczmarek MEP (Poland), Nathalie Griesbeck MEP (France), Anna Zaborska MEP (Slovakia), Angelika Werthmann MEP (Austria), Patrizia Toia MEP (Italy), Alf Svensson MEP (Sweden), Tamás Deutsch MEP (Hungary) amongst others. You can watch a short video of the event here:

MEP Meetings

In addition, a number of private meetings took place with MEPs over the two days including Elisabetta Gardini MEP (Italy), Giancarlo Scottà MEP (Italy), Nessa Childers MEP (Ireland), Marian Harkin MEP (Ireland), Filip Kaczmarek MEP (Poland), Liam Aylward MEP (Ireland) and Vicky Ford MEP (UK). Representatives of the Joint Task Force also had a meeting with Dr Tonio Borg, EU Commissioner for Health and Consumer Policy.

Tonio-Borg

Dr Tonio Borg, EU Commissioner for Health and Consumer Policy

DOWNLOADS

EED in the European Parliament

EED2013logo

While the day will be celebrated across Europe on Monday 11th February, due to the European Union calendar, events to mark the 3rd European Epilepsy Day will take place in the European Parliament in Brussels one week later, commencing Monday 18th February.

Stand Up for Epilepsy Photography Exhibition

This exhibition, which was first mounted in London during the European Congress on Epileptology in 2012, is a collection of images of sports stars photographed with people with epilepsy. The idea for the exhibition stemmed from London’s hosting of the 2012 Olympics. Among the 45 images included are several famous faces such as Usain Bolt!

The exhibition is being mounted on the ground floor of the Altiero Spinelli Building:  ASP G block, Ground Floor (beside the MEPs restaurant) and will be in place until Friday 22nd February.

Evening Reception

A reception to officially launch the photography exhibition will take place on Tuesday 19th February, starting at 18.30. The reception is being hosted by Gay Mitchell MEP and the name of the guest speaker will be announced in the coming day. A special part of the reception will be a gymnastics display by a young Hungarian girl, Veronika Mytikó. Veronika is being prevented from access to her gym and from gymnastic competition by Hungarian authorities on the basis that she has epilepsy. This is despite the fact that her epilepsy is fully controlled and her medical consultant has certified that there is no medical reason why she cannot participate in the sport.

Workshop on Epilepsy Costs & Prevalence

A one hour workshop, on Epilepsy Costs and Prevalence will take place on Tuesday 19th from 14:00 to 15:00. Hosted by Gay Mitchell MEP, the speakers will be Torbjörn Tomson (Sweden) and Christine Linehan (Ireland).

Private Meetings

A number of private meetings have been arranged in Brussels. These include a meeting with EU Health Commissioner Tonio Borg. Representatives from IBE and ILAE member associations are welcome to attend the Stand Up for Epilepsy Reception and/or the Workshop on Epilepsy Costs and Prevalence.

However, prior intention to attend must be sent to our colleagues in the International Bureau for Epilepsy.

Please use their  Contact Form on the website to write to us.

3rd Annual European Epilepsy Day

The 3rd annual European Epilepsy Day will be celebrated across Europe by IBE and ILAE member associations on Monday 11th February 2013.

The IBE/ILAE Joint Task Force Epilepsy Advocacy Europe is organising a week of celebrations in the European Parliament in Brussels, starting on Monday 18th February. Events planned include an exhibition of the photography initiative Stand Up For Epilepsy, featuring international athletes pictured with people with epilepsy; as well as a reception to launch the exhibition. It is also hoped to organise an significant workshop on the Prevalence and Cost of Epilepsy.

Further details will be available as plans progress.Is your association planning anything special for European Epilepsy Day? If so, we would love to hear from you so that we can share your great idea with other members.

For further information, please click here.

 

Newsletter

To access the latest newsletter of the European Joint Task Force of ILAE/IBE, please click NewsletterAugust2012

Advocating for Epilepsy

The European Advocates for Epilepsy is a group of Members of the European Parliament (MEPs) dedicated to improving awareness for epilepsy at EU level.

There are currently 30 MEPs who are members of this group but more members are always welcome. The European Joint Task Force on Epilepsy would like to invite interested persons to urge their local MEPs to join the group.

The current list of European Advocates is made up of the following members:

President Mitchell, Gay Ireland, EPP
Vice President Casa, David Malta, EPP
Vice President Gallagher, Pat the Cope Ireland, ALDE
Vice President Werthmann, Angelika Austria, NI
Vice President Skinner, Peter UK, S&D
Vice President Deva, Nirj UK, ECR

Ordinary Members

Arsenis, Kriton Greece, S&D
Childers, Nessa Ireland, S&D
Costello, Emer Ireland, S&D
Dodds, Diane UK
Engel, Frank Luxembourg, EPP
Harkin, Marian Ireland, ALDE
Griesbeck, Nathalie France, ALDE
Gyurk, Andras Hungary, EPP
Kaczmarek, Filip Poland, EPP
Kirilov, Evgeni Bulgaria, S&D
McGuinness, Mairead Ireland, EPP
Millan Mon, Francisco Spain, EPP
Mikolasik, Miroslav Slovakia, EPP
Ouzky, Miroslav Czech Republic, ECR
Pietikainen, Sirpa Finland, EPP
Poc, Pavel Czech Rep, S&D
Roithova, Zuzana Czech Republic, EPP
Scotta, Giancarlo Italy, EFD
Stevenson, Struan UK, ECR
Svensson, Alf Sweden, EPP
Takkula, Hannu Finland, ALDE
Tannock, Charles UK, ECR
Thyssen, Marianne Belgium, EPP
Toia, Patrizia Italy, S&D
Tzavela, Niki Greece, FDG
van de Camp, Wim The Netherlands, EPP
van Dalen, Peter The Netherlands, ECR

To find a list of your local MEPs please click here.

If you are interested in writing to your local MEP please first contact eoin@epilepsycongress.org who can provide you with further information and a template covering letter.

The more MEPs who can assist us the greater the possibility for improving awareness at EU level.

Follow

Get every new post delivered to your Inbox.

Join 27 other followers