TitleType of ActivityDue date of deliverable
D1.01 Report from the Kick-off meetingCoordination, Transversal Activities & Communication2019/03
D1.03 First report from the face-to-face ExCom and Policy Board meetingCoordination, Transversal Activities & Communication2019/10
D1.04 Second report from the face-to-face ExCom and Policy Board meetingCoordination, Transversal Activities & Communication2020/12
D1.5 Third report from the face-to-face ExCom and Policy Board meetingCoordination, Transversal Activities & Communication2021/07
D1.05 Annex-1 ExCom meeting slidesCoordination, Transversal Activities & Communication2021/07
D1.05 Annex-2 Policy Board Governing Board meeting slidesCoordination, Transversal Activities & Communication2021/07
D1.06 Fourth report from the annual ExCom and Policy Board meetingCoordination, Transversal Activities & Communication2022/07
D1.06 AnnexesCoordination, Transversal Activities & Communication2022/07
D1.07
Fifth report from the face-to-face
ExCom and Policy Board meeting
Coordination, Transversal Activities & Communication2023/07
D1.24 Initial Data Management PlanCoordination, Transversal Activities & Communication2021/03
D2.01 Final list of Prioritization CriteriaCoordination, Transversal Activities & Communication2020/07
D2.02 Prioritization Scheme for EJP RD actionsCoordination, Transversal Activities & Communication2020/07
D2.08 First Scoping PaperCoordination, Transversal Activities & Communication2019/07
D2.09
Second Scoping Paper
Coordination, Transversal Activities & Communication2020/07
D2.10 Third Scoping PaperCoordination, Transversal Activities & Communication2021/07
D2.11 4th Scoping PaperCoordination, Transversal Activities & Communication2022/07
D2.12 5th Scoping PaperCoordination, Transversal Activities & Communication2024/03
D2.16 First List of research and innovation needs requiring medium- or long-term approach and related Task ForcesCoordination, Transversal Activities & Communication2022/12
D2.17 List of research and innovation needs requiring medium- or long-term approach and related Task ForcesCoordination, Transversal Activities & Communication2020/06
D2.18 Third List of research and innovation needs requiring medium- or long-term approach and related Task ForcesCoordination, Transversal Activities & Communication2022/12
D2.19
Fourth List of research and innovation
needs requiring medium- or long-term
approach and related Task Forces
Coordination, Transversal Activities & Communication2023/08
D2.20 Fifth List of Research and Innovation Needs Requiring Medium- or Long- Term Approach and Related Task ForcesCoordination, Transversal Activities & Communication2023/06
D2.21 First Analysis of national state of play and alignment process with EJP RDCoordination, Transversal Activities & Communication2019/09
D2.22 Second Analysis of national state of play and alignment process with EJP RDCoordination, Transversal Activities & Communication2020/09
D2.23 Third Analysis of national state of play and alignment process with EJP RDCoordination, Transversal Activities & Communication2021/08
D2.24 Fourth Analysis of national state of play and alignment process with EJP RDCoordination, Transversal Activities & Communication2023/07
D2.25 First Report from strategic workshop with national policy makersCoordination, Transversal Activities & Communication2021/10
D2.26 Second Report from strategic workshop “Alignment of national rare diseases strategies/activities with the European Joint Programme on Rare Diseases” with national policy makersCoordination, Transversal Activities & Communication2023/10
D3.1 Dynamic catalogue of EJP-RD sustainable resources including Service Roadmap DatabaseCoordination, Transversal Activities & Communication2022/09
D3.03 Analysis of structures, business models and required complementarity from other relevant initiativesCoordination, Transversal Activities & Communication2022/06
D4.06 Set of template agreements for EJP RD websiteCoordination, Transversal Activities & Communication2021/06
D4.06 Annex A Material and Data Transfer AgreementCoordination, Transversal Activities & Communication2021/06
D4.06 Annex B Inter-Institutional Agreement for Joint Invention ManagementCoordination, Transversal Activities & Communication2021/06
D5.01 EJP RD websiteCoordination, Transversal Activities & Communication2019/03
D5.02 EJP RD NewsletterCoordination, Transversal Activities & Communication2019/03
D5.3 First RE(ACT) [and IRDiRC Conference 2021] Congress reportCoordination, Transversal Activities & Communication2020/05
D5.04 Second RE(ACT) Congress and IRDiRC Conference Congress reportCoordination, Transversal Activities & Communication2021/06
D6.05 First Public Call documents JTC2019-2022: call text, guidelines for applicants, proposal templatesFundings and Calls2019/02
D6.06 Second Public Call documents JTC2019-2022: call text, guidelines for applicants, proposal templatesFundings and Calls2020/01
D6.07 Third Public Call documents JTC2019-2022: call text, guidelines for applicants, proposal templatesFundings and Calls2020/11
D6.08 Fourth Public Call documents JTC2019-2022: call text, guidelines for applicants, proposal templates JTC 2019-2022Fundings and Calls2021/11
D7.02 Public Call document for Networking schemeFundings and Calls2019/12
D7.03 First List of funded networks in Networking schemeFundings and Calls2020/09
D8.02 Call documents for validationFundings and Calls2020/04
AD36 Virtual Platform Specification (VIPS)Coordinated Access to Data and Services2021/06
AD 49: Virtual Platform Specification (VIPS) V2.0Coordinated Access to Data and Services2022/09
D10.01 First Annual strategic report and Action plan for Pillar 2, including: Systematic surveys reports, QMS of Pillar 2 description, GDPR compliance report and sustainability planning reportingCoordinated Access to Data and Services2019/10
D10.02 Second Annual strategic report and Action plan for Pillar 2, including: Systematic surveys reports, QMS of Pillar 2 description, GDPR compliance report and sustainability planning reportingCoordinated Access to Data and Services2020/09
D10.03 Third Annual strategic report and Action plan for Pillar 2, including: Systematic surveys reports, QMS of Pillar 2 description, GDPR compliance report and sustainability planning reportingCoordinated Access to Data and Services2021/09
D10.04 Fourth Annual strategic report and Action plan for Pillar 2, including: Systematic surveys reports, QMS of Pillar 2 description, GDPR compliance report and sustainability planning reportingCoordinated Access to Data and Services2022/09
D10.05 Report on the State of the Art of existing resources in EuropeCoordinated Access to Data and Services2019/10
D11.01 First Ontological Model of Ressources MetadataCoordinated Access to Data and Services2019/12
D11.02 Second Ontological model of resources metadataCoordinated Access to Data and Services2021/01
D11.03 Third Ontological model of resources metadataCoordinated Access to Data and Services2021/12
D11.04 FourthOntological model of resources metadataCoordinated Access to Data and Services2022/12
D11.05 Fifth Ontological model of resources metadataCoordinated Access to Data and Services2023/12
D11.06 Virtual platform of RD resources annotated with EJP ontological modelCoordinated Access to Data and Services2019/12
D11.07 Virtual Platform ofRD resources annotated with EJP ontological modelCoordinated Access to Data and Services2021/01
D11.08
Second update Virtual platform of RD resources annotated with EJP ontological model
Coordinated Access to Data and Services2021/12
D11.09 Third update Virtual platform of RD resources annotated with EJP ontological modelCoordinated Access to Data and Services2022/12
D11.10 Fourth update Virtual platform of RD resources annotated with EJP ontological modelCoordinated Access to Data and Services2022/12
D11.11 Additional facilities integrated to resources regarding data deposition and access, including user guidelines and documentation for data deposition and accessCoordinated Access to Data and Services2020/01
D11.12 Second version Additional facilities integrated to resources regarding data deposition and access, including user guidelines and documentationCoordinated Access to Data and Services2021/01
D11.13 Third version Additional facilities integrated to resources regarding data deposition and access, including user guidelines and documentationCoordinated Access to Data and Services2021/12
D11.14 Fourth versionAdditional facilities integrated to resources regarding data deposition and access, including user guidelines and documentationCoordinated Access to Data and Services2022/12
D11.15 Fifth version Additional facilities integrated to resources regarding data deposition and access, including user guidelines and documentationCoordinated Access to Data and Services2023/12
D11.16 First Report on processed genome-phenome datasets and multi-omics use cases analysed, including description of new cloud and online analysis functionalities and toolsCoordinated Access to Data and Services2020/03
D11.17 Second Report on processed genomephenome datasets and multi-omics use cases analysed, including description of new cloud and online analysis functionalities and toolsCoordinated Access to Data and Services2021/03
D11.18 Third Report on processed genome- phenome datasets and multi-omics use cases analysed, including description of new cloud and online analysis functionalities and toolsCoordinated Access to Data and Services2021/12
D11.19 Fourth Report on processed genome-phenome datasets and multi-omics use cases analysed, including description of new cloud and online analysis functionalities and toolsCoordinated Access to Data and Services2022/12
D12.01 Report on core set of unified FAIR data standardsCoordinated Access to Data and Services2020/09
D12.02 First Report on core set of FAIR software
tools and on extended set of unified FAIR data standards, applied in EJP RD
Coordinated Access to Data and Services2022/04
D12.03 Second Report on core set of FAIR software tools and on extended set of unified FAIR data standards applied in EJP RDCoordinated Access to Data and Services2022/12
D13.01 Collection of (at least) 20 curated pathways in a (sub)portal on WikiPathwaysCoordinated Access to Data and Services2021/12
D13.02 Completed pathway analysis workflow (data
analysis including both types of genetic variant linking and network creation)
Coordinated Access to Data and Services2022/12
D13.03 Completed network analysis workflow (active node detection, lifestyle factor network evaluation and extended network analysis for drugs and toxic compounds)Coordinated Access to Data and Services2023/06
D14.01 First Report of Orphanet nomenclature training for trainers and national trainingsTraining and Empowerment2020/07
D14.02 Orphanet Nomenclature and Ontologies National TrainingsTraining and Empowerment
D14.03 First Report on course on interpretation of genetic variants and quality standardsTraining and Empowerment2019/12
D14.04 Second Report on course on interpretation of genetic variants and quality standardsTraining and Empowerment2023/12
D14.05 First Report on International course on undiagnosed diseasesTraining and Empowerment2020/12
D14.06 Second Report on International course on undiagnosed diseasesTraining and Empowerment2023/06
D14.07 First Report on sample data management training workshopsTraining and Empowerment2019/12
D14.08 Second Report on sample data management training workshopsTraining and Empowerment2023/12
D14.09 First Report on International course on Rare Disease Registries and FAIRification of data at sourceTraining and Empowerment2019/12
D14.10 Second Report on International course on RD Registries and FAIRification of data at the sourceTraining and Empowerment2023/12
D15.01 First Report on ExPRESSTraining and Empowerment2019/12
D15.02
Second Report on ExPRESS
Training and Empowerment2023/12
D15.03 First Report training patient representatives - scientific innovation and translational research in RDTraining and Empowerment2020/12
D15.04 Second Report on training of patient representatives on scientific innovation and translational research in RDTraining and Empowerment2023/12
D15.05 First Report on EURORDIS’ Leadership ProgrammeTraining and Empowerment2019/12
D15.06 Second Report on EURORDIS’ Leadership ProgrammeTraining and Empowerment2023/12
D15.07 Training plan for paediatric patients’ in the EJPTraining and Empowerment2021/07
D16.01 Draft content of the online academic courseTraining and Empowerment2019/10
Del 16.02 Content of the first five online modulesTraining and Empowerment2021/12
D17.01 Results of survey on preferences, needs and resources from the ERNs ecosystemTraining and Empowerment2019/09
D17.02 EJP RD ERN training programmesTraining and Empowerment2019/11
D17.03 First Annual report on implementation of training programsTraining and Empowerment2020/02
D17.04 Second annual report on the implementation of the training programTraining and Empowerment2023/12
AD37 Report of the first paediatric patient experts training courseTraining and Empowerment2021/07
AD38 Annual report on implementation of training programsTraining and Empowerment2021/12
AD39 Report on the proposed development and adaptation of training activitiesTraining and Empowerment2022/07
AD40 Report on training gaps identified and solutions proposedTraining and Empowerment2022/05