European Regional Executive CommitteeReport to the General Assembly, Montreal 2013 Membership

Chair: AthanasiosCovanis,GreeceVice chair:MichaelAlexa,AustriaMembers:VictoriaDimech,Malta

SvetlanaSimich,SloveniaSeppoSarkkula,Finland

VP Europe:JanetMifsud,Malta

The aims of the European Regional Executive Committee (EREC) are:

1. toimproveunderstanding,diagnosticandnursingfacilitiesandtreatmentcareforPWEandthereforeimprovequalityoflifeforthepatientsandtheirfamilies

2. toparticipateinvariouslobbyingactivities,togetherwithresearchers,forthefundingorraisingmoneyforresearchprojects.

EUROPEAN EPILEPSY DAYS

The1stEuropeanEpilepsyDaytookplaceon14thFebruary2011.SincethentherehavebeentwofurtherannualdaysforepilepsyinEurope.EuropeanEpilepsyDayisnoworganisedbyEpilepsyAdvocacyEurope,theJointTaskForceofIBE/ILAE.ThethemeforEED2011wasTheManyFacesofEpilepsy.In2012,thethemewastheBurdenofEpilepsy(ShatterEpilepsyStigma)andthisyearthethemewas‘StandUpforEpilepsy’.TheannualdayforepilepsyhasbeenpromotedbytheEuropeanRegionalExecutiveCommit-tee,encouragingmembersinEuropetocelebratethedaywithlocalactivi-ties.EventsarealsoheldintheEuropeanParliamenttoraiseawarenessofepilepsyintheparliament.

EUROPEAN EPILEPSY DAYMonday 11th February 2013

eedEUROPEAN EPILEPSY DAY

NOSeizuresSide-effects

STAND UP FOR EPILEPSY

Raising awareness on the need for improved treatment and care for the 6 MILLION people in Europe who have epilepsy Organised by Epilepsy Advocacy Europe - the Joint Task Force of IBE/ILAE, in association with the European Advocates for Epilepsy special interest group of MEPs in the European Parliament

Supported by an educational grant from UCB

OneofthemainpreoccupationsofERECin2012wasthepreparationoftheprogrammefortheEpilepsy&SocietyConferencetakingplaceinLjubljanainAugust2013.Thethemeoftheconferenceis:Break Down the Barriers and Stand Up for Epilepsy.Sessiontopicsinclude:• What’snextaftertheEuropeanDeclaration?• Whatarethealternativeswhendrugsdon’twork?• Beyondseizuresandmedication• Epilepsyandcognition• Whatistheroleofepilepsysupportgroups?• Socialmedia• Womenandepilepsy• Switchingbrands:whataretheissues?• EpilepsycareinEurope.

Special WorkshopFollowingcarefulanalysis,thedecisionwastakentoaddafull-dayAdvocatesforEpilepsyworkshoptothecongressprogramme.ThisinnovativeeventwillbeheldonWednesday28thAugust.SupportfortheworkshophasbeenreceivedfromtheILAECommissiononEuropeanAffairsandweareconfi-dentthatthiseventwillbeverypopular.Anumberofconferencebursarieswillbeavailable,fundedbytheJoninaGudmundsdottirfund.WehopethatasmanyIBEmembersaspossiblewillberepresentedattheconference.Forfurtherinformation:

www.epilepsyandsociety.org

The 29th International Epilepsy Congress, which was held in Rome, the city where the IBE was founded by the motion of Dr Abraham Moscovich in 1961, was the high point of 50 years of achievements and developments. Earlier in 2011, the IBE launched a pho-tography competition “Epilepsy Without Words”, as part of its Golden Jubilee celebrations, which attracted in excess of 300 artistic entries. One of the main cri-teria for the award was to express epilepsy through a photographic image and during the congress an exhibition of the best 60 photographs was displayed. An international panel of judges had the

very difficult task of choosing the winners from the excellent diversity of submissions. All photographs submitted to the competi-tion are now available in a special gallery on the IBE website, where each image has information on the photographer and the individual photograph. A focal point of previous congresses has been the IBE Poster Displays, which pro-vide IBE members with a unique opportu-nity to promote their activities, initiatives and achievements. In recognition of our Jubilee celebrations over 100 IBE mem-bers submitted posters which formed an impressive display. While the event celebrated the past 50

years, the posters served as a reminder of the present and future of the IBE. To commemorate the celebration, a special keepsake publication “50 years Focussed on Epilepsy” was launched. Compiled by Hanneke de Boer this excellent booklet provides a condensed history of the first 50 years of the IBE and is available for download from the IBE website. During the congress, all attendees had the

EPI FocusNewsletter of the IBE European Regional Committee Issue 2-2011

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1. IBE’sGoldenJubileeYear

2. IENewsJubileeAward

3. ERECMeetingsinRome

4. NewsfromGermanyandGreece

5. Danestaketothestreets

6. EuropeanDeclaration

7. UKTakeactioncampaign

8. LegislationinItaly

9. ServicesinNorway

10.Michael’sRomanDiary

12.BusyHungarianassociation

Celebrating IBE’s Golden Jubilee Year

Symphonia 5 by Douglas Capron, Canada. A seasonal choice from the IBE Golden Jubilee photo exhibition Epilepsy Without Words.

EREC OfficersChair: Thanos Covanis, GreeceVice chair: Michael Alexa, AustriaMembers: Victoria Dimech, Malta Seppo Sarkkula, Finland Svetlana Simich, SloveniaEx officio: Janet Mifsud, Malta

Material for the magazine shouldbe sent to Michael Alexa:

Email: michi19691@yahoo.de

Thanos Covanis, GreeceVictoria Dimech, MaltaMichael Alexa, AustriaSeppo Sarkkula, Finland Svetlana Simic, SloveniaJanet Mifsud, Malta Mike Glynn, Ireland

EPI FocusNewsletter of the IBE European Regional Committee

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1. LetterfromtheChair

2. SummerCampinCroatia

EpilepsyActionlaunchesmagazineonKindle

3. NationalConferenceinMalta

GravesendNetworkcelebrates30years

4. ReportfromAOEC,Manila

6. NewsfromGreece

NewMemberinSerbia

7. EEDinRussia

8. Epilepsy&Society2013

EREC OfficersChair: Thanos Covanis, GreeceVice chair: Michael Alexa, AustriaMembers: Victoria Dimech, Malta Seppo Sarkkula, Finland Svetlana Simich, SloveniaEx officio: Janet Mifsud, Malta

Material for the magazine should be sent to

Michael Alexa: michi19691@yahoo.de

Dear European MembersDear friends and readersWe are about to edit the 1st EPIFocus of the current year, the 4th issue in total and you - our readers and authors - continue to be the backbone of the journal. There are several reports on activities in the European Region in this issue. However, more reports are needed, particularly from those parts of Europe that still need to come “out of shadows” and show their presence in EPIFocus. This is your Journal, that depends on the input of your material and you should be very proud of it. Re-porting your activities will act as a stimulus to other IBE/Members to become more active. EREC would like to thank you and encourage you to continue.This year Europe celebrated a very suc-cessful 2nd European Epilepsy Day on February 14th, with the theme the Burden of Epilepsy. The co-chairs of the IBE-ILAE Joint Task Force - Epilepsy Advocacy Europe - travelled to Strasbourg to meet the MEPs from Greece, the UK, Hungary, Slovakia, Netherlands, Italy and Czech Re-public. In addition, 60 wonderful photo-graphs from the IBE Jubilee Photography Competition were on display in the parlia-ment building to celebrate the event.More importantly, it is very heartening to hear of the interesting and successful activities organised by IBE and ILAE as-sociations throughout Europe to celebrate European Epilepsy Day. I hope that this

great opportunity to highlight epilepsy across Europe will continue to grow and develop in the coming years.I am delighted to announce that the dates for the next Epilepsy & Society Confer-ence are now confirmed. The meeting will take place in the beautiful city of Ljublja-na, Slovenia from the 28th to 30th August 2013. The European Regional Executive Committee met recently in Dublin to finalise the programme, together with two of our colleagues from Slovenia. It is a ter-rific programme, full of interesting sessions and, of course, excellent speakers. We have chosen as the congress theme: Break Down the Barriers and Stand Up for Epilepsy!As I write this letter to you, Janet Mifsud, a member of the European Regional Execu-tive Committee, is attending the annual WHO European Regional meeting in Malta at which she has been allotted two minutes for an oral presentation, in addi-tion to a short written submission. This is a fantastic opportunity to bring epilepsy even more into focus in the WHO.Other upcoming activities in Europe include a workshop in Brussels on the prevalence of epilepsy, organised by the Joint Task Force. Preparations are under-way and we should have more information in the next few weeks. I hope that many IBE member associations will be able to send representatives to this meeting.Already there are plans in place for 2013. European Epilepsy Day will take place on Monday 11th February and the theme has been chosen as Stand Up for Epilepsy: No seizures, No side effects. Further infor-mation will be available in the coming months on how the event will be celebrat-ed in the European Parliament. Also next year, during the Irish Presidency of the European Parliament, a special fo-rum on research is being organised by the Joint Task Force. This event has received support from EU funds. The programme is almost complete and we will have more information available to us soon.On a happy note, we are delighted to have in the family of IBE/EU Members

the Albanian Association of Epilepsy, as a full Member and the Epilepsy Associa-tion “Doctors for Support”, Serbia as an Associate Member. Both are welcome. We congratulate Dr Jera Kruja and Dr Biljana Kohen and all the members of their asso-ciations for their efforts and achievement. Finally, for those IBE members who are reading this newsletter in London, I hope that you will be able to come along to the informal meeting we have arranged to take place on Tuesday 2nd October from 13:00-15:00 in Tactic Room 5. I hope to see you there!

With best wishes,

Athanasios CovanisChair, IBE European Regional Executive CommitteeMember: Commission of European Affairs

Thanos Covanis, GreeceMichael Alexa, AustriaVictoria Dimech, MaltaSeppo Sarkkula, Finland Svetlana Simic, SloveniaJanet Mifsud, Malta Mike Glynn, Ireland

EPIFocus-European Regional Committee newsletter

Firstintroducedin2011,asameansofsharingnewsandexperiencesbetweenmembersinEurope,fiveis-suesofEPIFocushavebeencirculatedtodate.Sinceitwasfirstintroduced,theinterestofmembersinsubmittingmaterialforthemagazinehasgraduallyincreasedandwehopethatthiswillcontinueinthefuture.

MaterialisgatheredbyMichaelAlexaandthemagazineinlaidoutbyAnnLittle.ItiscirculatedelectronicallytoallmembersandisalsouploadedtotheEuropeanCommitteesectionoftheIBEwebsite.HardcopieswereprintedforthecongressinRomein2011andfortheEuropeanCongressonEpileptology,whichtookplaceinLondoninOctober2012.

InconjunctionwiththeIrishPresidency,aEuropeanEpilepsyForum–acollaborativeresearchconferencefundedbythe7thFrameworkProgrammeoftheEuropeanCommission,andorganisedbytheIBE/ILAEJointTaskForceEpilepsyAdvocacyEurope–tookplaceinDublininMay2013.TheeventalsocoincidedwiththeEuropeanMonthoftheBraininMay2013andwasextremelysuccessful.

ItwasthefirstconferenceonepilepsyresearchtobesponsoredbytheEuropeanUnionandwas,therefore,beahighlysignificantoccasion.ItbroughttogetherthekeyEuropeanstakeholders–includingresearchers,clinicians,epileptologists,neurologists,primarycare

physicians,basicneuroscientists,socialworkers,epilepsyspecialistnurses,medical&postgraduatestudents,healthcareprofessionals,layorganisations,personswithepilepsy,healthpolicymakersandgovernmentrepresentatives.

Followingitssuccess,itishopedtheForumwillbethefirstofalongseries.

DUBLIN 2013European Forum on Epilepsy Research

Welcome to New MembersTheEuropeanRegionalExecutiveCommitteeisverypleasedtowelcomethenewmemberswhohavejoinedsince2011:

1. Albanian Association of Epilepsy (Full Member)

2. Epilepsy Association Doctors for Support - Serbia (Associate Member)

3. Comité National pour l’Epilepsie CNE, France (Full Member)

4. Epilepsija Aura, FYR Macedonia (Full Member)

5. Association of Doctors – Epileptologists and Pa-tients, Russian Federation (Associate Member)

6. National Society for Epilepsy, UK (Associate Member)

7. SVS NEVRO – Movement of Doctors and Patients against Serious Diseases of the Nervous System and Epilepsy, Kazakhstan (Full Member)

Welookforwardtoworkingwiththesenewmembersinthefuture.

During2012,ERECcarriedouttwosurveys:oneofthesewasonIBEmembershipinEuropeandthesecondfocusedonDrivingRegulationsinEurope.TheresultsofbothsurveysarenowavailableontheERECsectionoftheIBEwebsite.

Thecommitteewouldliketothankallthosememberswhotookthetimetocompletethesurvey

Surveys on Membership and Driving

Thank You!Asthetermofthecurrentcommitteecomestoaclose,withthelastmeetingduetotakeplaceinMontrealinJune,Iwouldliketothankmycolleaguesfortheirhelpandsupportoverthepastfouryears.IwouldalsoliketomentionmyappreciationoftheeffortsofallIBEmembersinEuropewho,throughtheirdedicationandhardwork,aremakingrealdifferenceforpeoplewithepilepsyandtheirfamilies.Athanasios CovanisChairJune 2013