Welcomeback to the first newsletter edition of the 2020! In this edition,wewould like to focus your attention to the DNA Radio podcast where ourCoordinator,Dr.DariaJulkowskatalksabouttheEJPRD.Moreover,donotmissnumerousregistrationstocongresses,workshopsandfundingopportunitiesopenby,orinpartnershipwithEJPRD.Inaddition,youwillfindalistofupcomingconferences,meetings,workshops,andsummerschoolsacrossEuropeaswellasalistofseveraladditionalopencallsonneuroscience,ethics,andpersonalizedmedicine.ERNsinitiativessuchasmeetingsandwebinarsarealsoreported.Lastbutnotleast,theEJPRDhasbeenmentionedtogetherwithIRDiRConthe“Orientation”officialdocumentpreparedbytheEUCommissiontodefinekeyimpactfactorsfortheHorizonEuropeprogram(2021–2024).

Dr.Daria Julkowska joined thepodcast showonDNARadio forRareDiseaseMonthtospeakaboutrarediseasesandpresenttheEJPRDproject.DNATodaypodcast and radio show explores how genetics impacts our health and it

Toconsulttheonlineversionclickhere

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CelebratingRareDiseasesMonth!PodcastonEJPRDisnowonlineonDNA

Radio

hostedbyKiraDineenthatinterviewsleadersingenetics.ThispodcastispartoftheDNATodayDiscoverNewAdvancesintheworldofgeneticprogram.

Thisspecialco-jointeventhasbeenorganizedincollaborationwiththeEJPRD,and inpartnershipwithEurordisandRareDisease International.Special ratesareavailable!ThistransversaleventwillgiveyoutheopportunitytoassisttotheworkshoponorphandrugdevelopmentorlearnaboutthelatestinnovationsinRDdiagnosis,therapiesandsocietalinclusiveness.Itwillbeauniqueoccasiontonetwork andmeet high-profile scientific leaders, experts aswell as youngscientists from a variety of breakthrough scientific fields and patients/patientadvocacy organizations. Deadline for the abstract submission has beenextendedto10Feb.

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EJPRDinternalcallforproposals-ClinicalTrialsMethodologyDemonstrationProjectsThe Clinical Trials MethodologyDemonstration Projects Call is nowopen for submission of the 1-pagerletters of interest. Deadline is 15March 2020. It aims to show theusability and capability of theinnovative statistical methodologiesforclinicaltrialsinrarediseases,whichhave not been demonstrated onexistingdata forspecific rarediseaseclinicaltrialsyet.Pleasenotethatthiscallisopenforteamsfrominstitutionsthat are beneficiaries of the EJP RDproject.

EJPRDEuropeanReferenceNetworks(ERNs)RDTrainingandSupportProgramsThetrainingprogramsarebasedontwomaincomponents:ResearchMobilityFellowship(RMF)andResearchTrainingWorkshops(RTW).TheRMFcallisnowopen,deadlineis16March.TheaimistofinanciallysupportPhDstudentsandmedicaldoctorsworkinginERN-memberinstitutionstoundertakeshortscientificvisits(secondments)upto3monthsfosteringspecialistresearchtrainingoutsidetheircountriesofresidenceandwithinoneoftheERNhostinstitutions.TheRTWcallisaimedatidentifyingthemostsuitableproposalsfortheorganizationof2daysworkshoptargetedtotheERNs

RE(ACT)Congress2020andIRDiRCConference,

Berlin,Germany.11-14March2020

EJPRDOPENCALLS

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needs.ThecostsoftheworkshopswillbecoveredbytheEJPRD.OnlyworkshopproposersfromERNorEJPRDbeneficiaryinstitutionscanapply.SelectedRTWwillhavetotrainERNresearchersandclinicians.TheworkshopswillbeopentoERNsonly.Deadlineis2March2020.

Dr. Daria Julkowska won this award for her “outstanding leadership anddedicationshowntotherarediseasecommunityandthepositiveimpactshehashadonrarediseaseresearchandpartnershipsinEuropeandbeyond”.HercommitmenttorarediseasecommunitywithinE-Rare,IRDiRC,andmostnotablyascoordinatoroftheEJPRDhasbeenacknowledged.

EuropeanPaediatricTranslationalResearchInfrastructure(EPTRI)OpenMeeting.2–3April2020.Brussels,Belgium

EPTRI is an EU fundedproject aimed to designthe framework for a newinfrastructurededicatedtopaediatric research thatwillwork toaccelerate thepaediatric drugdevelopment processesfrom medicines discovery,biomarkers identification,andpreclinicalresearchtodevelopmental

ELIXIRBioinformaticsIndustryForum.28April2020.London,UKThe ELIXIR BioinformaticsIndustry Forum bringstogether technicalspecialists and academicsto discuss visionary ideas,bottlenecks and solutionsto some of the majorchallenges in the datadriven life science sector.This year’s speakersinclude a mix from

2ndERN-TransplantChildWorkshop.14May2020.Warsaw,Poland.

The main aim of thisworkshop is to addresstraining in the area ofpaediatric transplantationaccording to the holisticapproach of the networkand allows integrateeducationalactivities inalltype of transplant and awide variety ofprofessionals involved inall phases of the

MoreEJPRDnewsCongratstoourcoordinatorDr.Daria

JulkowskafortheEURORDISBlackPearl2020–EuropeanRareDiseaseLeadership

Award.

RelatedMeetings

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pharmacology, agetailored formulations andmedical devices. The finalgoal is to facilitate thetranslationoftheacquirednew knowledge andscientific innovation intopaediatric clinical studiesphases and medical use.[DJ1]Thisdesignphaseofthe EPTRI project is on itsfinal rush and beforeentering in thepreparatory phase, EPTRIwould like to inviteresearchers, companies,agencies, patient groups,health care professionals,and all other interestedparties to participate tothe EPTRI Open meetingthat will be held on 2 - 3April2020inBrussels.Thecall for abstract to thismeeting is open, deadlineis29February2020.

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software providers,funders and academicssuch as Amazon WebServices, Google, theUniversity of Oxford, andthe Chan ZuckerbergInitiative. The event is auniqueand interactivemixof high-level keynotepresentations, roundtablesessions, paneldiscussions and fiveminute Flash Talks fromstart-ups and SMEs. Theeventisfreetoattend.

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transplant. This workshopprovidesskillstoperformacommon and transversalapproach to all types ofpaediatric transplantationprocedure.Thiseditionwillbefocusedonmedicalandnursing team involved inthe follow-up of paediatrictransplantedpatients.

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ECRD,15–16May2020.Stockholm,SwedenTheEJPRDisafullpartnerof the ECRD event that isglobally recognized as thelargest, patient-led raredisease event in whichcollaborative dialogue,learning and conversationtakes place, forming thegroundwork to shapefuture rare diseasepolicies. Early birdregistration is open until20 March 2020.Submissions for posterabstracts are now openuntil10February2020.

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EuropeanConferenceontheDiffusionofGenomicMedicine:HealthEconomics&Policy,28–29May2020.Dijon,FranceThis conference aims tocontribute to thedevelopment of researchin genomic medicineconcerning its evaluation,its dissemination, and thepublic policiesaccompanying this newtype of medicine. Giventhis conference is part ofthe H2020 Europeanproject “Solve-RD: Solvingthe unsolved RareDiseases”, researchfocusing on rare diseasesis one of the targets.Registration opens on 3Feb 2020 and the Call forAbstract closes on 12 Feb2020.

3rdNeuromuscularTranslationSummerSchool.6–10July2020.Leiden,NetherlandTheEURO-NMDandTREAT-NMD building on the pasttwo summer schools,organize this residentialcourse that will furnishattendees such asresearchers and clinicianswith a well-roundedknowledge of thetranslational pathway.Attendeeswill alsobenefitfrom the very latestknowledgeavailable in theneuromuscular communityas this course isdeliveredby key stakeholder in thefield. To ensure a high-quality learningenvironment class sizesarekeptdeliberatelysmall.With this in mind, it isrecommended applyingpromptly to ensure themaximum chance of

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successfully securing aplaceattheirnextSummerSchool.Registrationisnowopen.

The H-Care pilot survey is the initiative ofEURORDIS Rare Barometer and 4 EuropeanReference Networks. Its long term goal is todevelop a centralised patient feedbackmechanism across the 8000+ rare and complexdiseases,andacrossall24ERNs.Allpatientswitha rareorcomplexdiseaseplusmembersof theirfamiliesandtheircaregiverscanparticipateinthesurvey.Patientslivingwithadiseasetreatedinoneof the four European Reference Networks thatinitiated this pilot survey are specificallyencouraged toparticipate: lungdiseases; kidneydiseases; urinal, colorectal and genital diseases;and genetic tumour risk syndromes. The surveywillrununtil29February,2020.FormoreinfoandH-Carecommunicationtoolkit.

ERAPerMed Call on “Multidisciplinary ResearchProjects on Personalised Medicine – Pre-/Clinicalresearch, Big Data and ICT, Implementation andUser’s Perspective” is online, deadline for pre-proposalsubmissionis5March2020,5pmCET.

ZNM – Zusammen Stark! e.V. – ResearchGrantAwardsdesignedtopromoteresearchinareasthatwillhavethegreatestpotentialtomovetowards treatments and cures for centronuclearmyopathiesareopen.Deadlineis31March2020.

ERA-Net Neuron Calls Proposals forTransnational Research Projects are open. The2020 “Sensory Disorders” closes on 10 March2020, 2pm CET, while the 2020 “Neuroethics(ELSA)”on28April2020,2pmCET.

RelatedNews&Opportunities

RareDiseseasesRelatedCalls

JPND transnational callon “Novel imaging andbrain stimulation methods and technologiesrelatedtoneurodegenerativediseases” isonline.DeadlineforthePre-proposalsis3March2020at3pmCET, for full proposals is30 June2020at3pmCET.

A list of upcomingwebinars organized by thefollowingERNsisavailable:EURO-NMD,MetabERN,ERN-RND-ERN-EuroNMD- European Academy of Neurology (EAN), ERN-EpiCARE,ERKNet,EuroBloodNet.More info on the ERNs upcoming annualmeetingsandworkshops listedbelowcanbefoundhere:1. 3rd Annual EpiCARE meeting. 14 - 15

February2020.Lyon,France2. 4th Annual Meeting of the European

Reference Network for Rare KidneyDiseases. 13 - 14 May 2020. Heidelberg,Germany2nd ERN-TransplantChildworkshop. 14May2020.Warsaw,Poland3rd Neuromuscular Translational SummerSchool 2020. 6 – 10 July 2020. Leiden,Netherlands

ThisinitiativehasreceivedfundingfromtheEuropeanUnion'sHorizon2020researchandinnovationprogrammeunderGAN°825575

EJPRDiscoordinatedbytheNationalInstituteforHealthandMedicalResearch(INSERM)

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