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:doricad@yahoo.com• 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