balkan congress
TRANSCRIPT
Cluj-Napoca, June 26-27, Medical University „Iuliu Hatieganu” „Share an inspired vision in RD”
Conference chairsProf. Segolene Ayme (ORPHANET, Rare Diseases Task Force, France) Antoni Montserrat Moliner (EUROPEAN COMMISSION - DG SANCO)
BALKAN CONGRESS FOR RARE
DISEASES ROMANIA
The National Alliance for Rare Diseases in Romania, Romanian Society for Human Genetics and
Medical University „Iuliu Hatieganu” Cluj Napoca warmly invite you to attend
Day 1
08.30 - 09.00 REGISTRATION
09.00 - 10.30 OPENING OF THE CONFERENCE ExpectedspeechesbytheMinisterofHealthofRomania,LocalAuthorities, RectoroftheMedicalUniversityofCluj-Napoca,OrphanetEurope,Eurordis, EuropeanCommission,RONARD
10.30 - 11.00 COFFEE BREAK
11.00 - 13.00 PANEL SESSION Prof.Dr.SegoleneAyme(ORPHANET,RareDiseasesTaskForce,France), CommissionCommunicationandCouncilRecommendationonRD EUINITIATIVESTOIMPROVETHEACCESSTOCARE AndersOlauson,presidentEuropeanPatientForum Wills-HughesWilson,SeniorDirectorHealthPolicyEurope,Genzyme
13.00 - 14.00 LUNCH
14.00 - 16.00 PARALEL WORKSHOPS Co–chairs.Prof.PopVictorSRGM,Dr.CristinaVladu NEEDSASSESMENTINTHEFIELDOFTHERD 1.Diagnosisandscreening–chairDr.CristinaSkrypnyk,Prof.Dr.MariaPuiu 2.Treatmentandrehabilitation–chair.Dr.IoanaRotaru&Prof.Dr.DanielDavid 3.Socialservices-Dr.MihaiGafencu,DoricaDan 4.EducationandResearch–Prof.Dr.VictorPop&Dr.CristinaVladu
15.30 – 16.00 Report the results in the plenary session
16.00 - 16.30 COFFEE BREAK
16.30 - 18.30 PROBLEMS ENCOUNTERED IN DIAGNOSIS AND MANAGEMENT OF THE RARE DISEASES IN BALKAN AREA–chair.Dr.CristinaRusu,Iasi 1.DelaysindiagnosisandinsufficientspecializedhealthcareservicesforRDin Balkanarea(screening,genetictestsavailability,centers,etc.) 2.Relevantexperiencesindifferentstates(Romania,Hungary,Croatia,Bulgaria etc.)Reportoftheresultsintheplenarysessionday2–Dr.PoganyGabor,Hungary
18.30 - 19.30 GALA DINNER
Day 2
09.30 - 10.30 BEST PRACTICE AND COOPERATION Chair,Prof.Dr.GrigorescuSido; Methodologytoissuebestpracticeguidelinesandco-operatewithphysicians inBalkans;InitiativesfromBalkancountries
10.30 - 11.00 COFFEE BREAK
11.00 - 13.00 PANEL SESSION ChristelNourissier-Chair,EURORDIS PaneldiscussionsregardingtheactionsundertakeninBalkanareainorderto defineanationalpolicyonRareDiseases -Invitedspeakers.differentstakeholdersfromeachcountry
14.00 - 17.00 RARE DISEASES MANAGEMENT cochairs-Dr.GaborPogany&Dr.AureliaSzekely InterdisciplinaryapproachinmanagementoftheRD (CROMOZOMIAL,METABOLIC,NEUROLOGICAL,ENDOCRINE,etc.) MaryzevanSchoneveld(Pompepatient;InternationalPompeassociation) Neuromusculardisease,herexperienceinnegotiatingwithauthorities(funding); buildingaPatientsociety;herownexperiencewithagenetic; lifethreateningdisease; Prof.Dr.AnnaTylki-Szymanska.metabolicdisorders;Polishexperience Scientificpresentationsfromselectedabstracts(15min./each);
17.00 - 17.30 COFFEE BREAK
17.30 - 18.30 FROM RARE DAY TO EVERY DAY CARE WhyandhowtoadvocateforRD–DoricaDan,RONARD Patientsadvocacygroups,RONARD Professionaladvocacygroups,BAPES/ICRDOD
18.30 - 19.00 CONCLUSIONS AND HOMEWORK
19.00 DINNER
Authorsareinvitedtowriteandsubmitabstractsfororalandposterpresentationsaccordingtothefollowinginstructions.
International Conference CommitteeProf. Dr. Segolene AYME (ORPHANET, Rare Diseases Task Force, France), Conference chairChristel Nourissier, EURORDIS
Antoni Montserrat Moliner (EUROPEAN COMMISSION -DG SANCO), Conference chairDorica Dan – RPWA/ RONARD
Scientific CommitteeProf. Dr. Paula Grigorescu - Sido - chair Prof. Dr. Victor Pop - chair
Prof. Dr. Maria Puiu Dr. Cristina SkrypnykConf. Dr. Vlad Gorduza Conf. Dr. Cristina RusuProf. Dr. Emilia Severin Conf. Dr. Corin Badiu
Dr. Cristina Vladu Prof. Dr. Daniel David
Instructions for writing abstracts• AbstractsmustbesubmittedinEnglish• Abstractsshouldnotexceed250words• FontshouldbeTimesNewRoman,size10pts• Titleoftheabstractshouldbewrittenincapitalletters(size12pts,TimesNewRoman)• Authorsstartanewlineandwritethelastnameandfirstnameinitialforallauthors
withouttitles;underlinethenameofthepresentingauthor• Startanewlineandwritethenameoftheinstitution,cityandcountryforallauthors• Thenwritedownthee-mailaddressoftheauthorpresentingthepaper• Abstractsshouldconsistpreferablyofaimofthestudy,methods,resultsandconclusions• Yourabstractwillbepublishedexactlyassubmitted(linguisticaccuracyisthe
responsibilityoftheauthor)• Acceptedabstractsandfull-textpresentationwillbepublishedinthesupplementof
JournalofPaediatrics
Instructions for submitting abstracts• Onlinesubmission:[email protected]• Abstractssubmittedbyfaxwillnotbeaccepted• SubmissionDeadlineextendedtoMay,25,2009• NotificationofAcceptanceofAbstractswillbesentelectronicallytothecorresponding
authorbyJune2,2009
Technical equipment• LCDprojectorwillbeavailablefororalpresentation.• Speakersarekindlyaskedtosubmittheircomputerpresentationsonedayoratleasttwo
hoursbeforetheirlectureinthepreparationroomandgivethemtothetechnician.• Preparationroomwillbeopendailyfrom8.00amto7.00pm.• Posterpresentations• PostersmustbewritteninEnglish.• Posterdimensions.max.80cm(width)x120cm(height)• Posterswillbedisplayedinthecongressareaonposterpanels.Theauthorsshouldbring
postersinperson.SuppliesforpostermountingwillbeprovidedbytheCongressionalService.
Registration and accomodation http.//www.simbotours.ro/go/conference Deadline for registration June 10, 2009
Registration fee 35 eur or 150 lei;Permanent updated information about the conference on
http://anbraro.wordpress.com/2009/04/27/balkan-congress-for-rare-diseases-romaniaThe conference will be accredited with continuous educational credits for
doctors, psychologists, social workers, teachers etc.
Eveniment mediatizat cu sprijinul