D1.01 Report from the Kick-off meeting | Coordination, Transversal Activities & Communication | 2019/03 |
D1.03 First report from the face-to-face ExCom and Policy Board meeting | Coordination, Transversal Activities & Communication | 2019/10 |
D1.04 Second report from the face-to-face ExCom and Policy Board meeting | Coordination, Transversal Activities & Communication | 2020/12 |
D1.5 Third report from the face-to-face ExCom and Policy Board meeting | Coordination, Transversal Activities & Communication | 2021/07 |
D1.05 Annex-1 ExCom meeting slides | Coordination, Transversal Activities & Communication | 2021/07 |
D1.05 Annex-2 Policy Board Governing Board meeting slides | Coordination, Transversal Activities & Communication | 2021/07 |
D1.06 Fourth report from the annual ExCom and Policy Board meeting | Coordination, Transversal Activities & Communication | 2022/07 |
D1.06 Annexes | Coordination, Transversal Activities & Communication | 2022/07 |
D1.07
Fifth report from the face-to-face
ExCom and Policy Board meeting | Coordination, Transversal Activities & Communication | 2023/07 |
D1.24 Initial Data Management Plan | Coordination, Transversal Activities & Communication | 2021/03 |
D2.01 Final list of Prioritization Criteria | Coordination, Transversal Activities & Communication | 2020/07 |
D2.02 Prioritization Scheme for EJP RD actions | Coordination, Transversal Activities & Communication | 2020/07 |
D2.08 First Scoping Paper | Coordination, Transversal Activities & Communication | 2019/07 |
D2.09
Second Scoping Paper | Coordination, Transversal Activities & Communication | 2020/07 |
D2.10 Third Scoping Paper | Coordination, Transversal Activities & Communication | 2021/07 |
D2.11 4th Scoping Paper | Coordination, Transversal Activities & Communication | 2022/07 |
D2.12 5th Scoping Paper | Coordination, Transversal Activities & Communication | 2024/03 |
D2.16 First List of research and innovation needs requiring medium- or long-term approach and related Task Forces | Coordination, Transversal Activities & Communication | 2022/12 |
D2.17 List of research and innovation needs requiring medium- or long-term approach and related Task Forces | Coordination, Transversal Activities & Communication | 2020/06 |
D2.18 Third List of research and innovation needs requiring medium- or long-term approach and related Task Forces | Coordination, Transversal Activities & Communication | 2022/12 |
D2.19
Fourth List of research and innovation
needs requiring medium- or long-term
approach and related Task Forces | Coordination, Transversal Activities & Communication | 2023/08 |
D2.20 Fifth List of Research and Innovation Needs Requiring Medium- or Long- Term Approach and Related Task Forces | Coordination, Transversal Activities & Communication | 2023/06 |
D2.21 First Analysis of national state of play and alignment process with EJP RD | Coordination, Transversal Activities & Communication | 2019/09 |
D2.22 Second Analysis of national state of play and alignment process with EJP RD | Coordination, Transversal Activities & Communication | 2020/09 |
D2.23 Third Analysis of national state of play and alignment process with EJP RD | Coordination, Transversal Activities & Communication | 2021/08 |
D2.24 Fourth Analysis of national state of play and alignment process with EJP RD | Coordination, Transversal Activities & Communication | 2023/07 |
D2.25 First Report from strategic workshop with national policy makers | Coordination, Transversal Activities & Communication | 2021/10 |
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 makers | Coordination, Transversal Activities & Communication | 2023/10 |
D3.1 Dynamic catalogue of EJP-RD sustainable resources including Service Roadmap Database | Coordination, Transversal Activities & Communication | 2022/09 |
D3.03 Analysis of structures, business models and required complementarity from other relevant initiatives | Coordination, Transversal Activities & Communication | 2022/06 |
D4.06 Set of template agreements for EJP RD website | Coordination, Transversal Activities & Communication | 2021/06 |
D4.06 Annex A Material and Data Transfer Agreement | Coordination, Transversal Activities & Communication | 2021/06 |
D4.06 Annex B Inter-Institutional Agreement for Joint Invention Management | Coordination, Transversal Activities & Communication | 2021/06 |
D5.01 EJP RD website | Coordination, Transversal Activities & Communication | 2019/03 |
D5.02 EJP RD Newsletter | Coordination, Transversal Activities & Communication | 2019/03 |
D5.3 First RE(ACT) [and IRDiRC Conference 2021] Congress report | Coordination, Transversal Activities & Communication | 2020/05 |
D5.04 Second RE(ACT) Congress and IRDiRC Conference Congress report | Coordination, Transversal Activities & Communication | 2021/06 |
D6.05 First Public Call documents JTC2019-2022: call text, guidelines for applicants, proposal templates | Fundings and Calls | 2019/02 |
D6.06 Second Public Call documents JTC2019-2022: call text, guidelines for applicants, proposal templates | Fundings and Calls | 2020/01 |
D6.07 Third Public Call documents JTC2019-2022: call text, guidelines for applicants, proposal templates | Fundings and Calls | 2020/11 |
D6.08 Fourth Public Call documents JTC2019-2022: call text, guidelines for applicants, proposal templates JTC 2019-2022 | Fundings and Calls | 2021/11 |
D7.02 Public Call document for Networking scheme | Fundings and Calls | 2019/12 |
D7.03 First List of funded networks in Networking scheme | Fundings and Calls | 2020/09 |
D8.02 Call documents for validation | Fundings and Calls | 2020/04 |
AD36 Virtual Platform Specification (VIPS) | Coordinated Access to Data and Services | 2021/06 |
AD 49: Virtual Platform Specification (VIPS) V2.0 | Coordinated Access to Data and Services | 2022/09 |
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 reporting | Coordinated Access to Data and Services | 2019/10 |
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 reporting | Coordinated Access to Data and Services | 2020/09 |
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 reporting | Coordinated Access to Data and Services | 2021/09 |
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 reporting | Coordinated Access to Data and Services | 2022/09 |
D10.05 Report on the State of the Art of existing resources in Europe | Coordinated Access to Data and Services | 2019/10 |
D11.01 First Ontological Model of Ressources Metadata | Coordinated Access to Data and Services | 2019/12 |
D11.02 Second Ontological model of resources metadata | Coordinated Access to Data and Services | 2021/01 |
D11.03 Third Ontological model of resources metadata | Coordinated Access to Data and Services | 2021/12 |
D11.04 FourthOntological model of resources metadata | Coordinated Access to Data and Services | 2022/12 |
D11.05 Fifth Ontological model of resources metadata | Coordinated Access to Data and Services | 2023/12 |
D11.06 Virtual platform of RD resources annotated with EJP ontological model | Coordinated Access to Data and Services | 2019/12 |
D11.07 Virtual Platform ofRD resources annotated with EJP ontological model | Coordinated Access to Data and Services | 2021/01 |
D11.08
Second update Virtual platform of RD resources annotated with EJP ontological model | Coordinated Access to Data and Services | 2021/12 |
D11.09 Third update Virtual platform of RD resources annotated with EJP ontological model | Coordinated Access to Data and Services | 2022/12 |
D11.10 Fourth update Virtual platform of RD resources annotated with EJP ontological model | Coordinated Access to Data and Services | 2022/12 |
D11.11 Additional facilities integrated to resources regarding data deposition and access, including user guidelines and documentation for data deposition and access | Coordinated Access to Data and Services | 2020/01 |
D11.12 Second version Additional facilities integrated to resources regarding data deposition and access, including user guidelines and documentation | Coordinated Access to Data and Services | 2021/01 |
D11.13 Third version Additional facilities integrated to resources regarding data deposition and access, including user guidelines and documentation | Coordinated Access to Data and Services | 2021/12 |
D11.14 Fourth versionAdditional facilities integrated to resources regarding data deposition and access, including user guidelines and documentation | Coordinated Access to Data and Services | 2022/12 |
D11.15 Fifth version Additional facilities integrated to resources regarding data deposition and access, including user guidelines and documentation | Coordinated Access to Data and Services | 2023/12 |
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 tools | Coordinated Access to Data and Services | 2020/03 |
D11.17 Second Report on processed genomephenome datasets and multi-omics use cases analysed, including description of new cloud and online analysis functionalities and tools | Coordinated Access to Data and Services | 2021/03 |
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 tools | Coordinated Access to Data and Services | 2021/12 |
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 tools | Coordinated Access to Data and Services | 2022/12 |
D12.01 Report on core set of unified FAIR data standards | Coordinated Access to Data and Services | 2020/09 |
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 Services | 2022/04 |
D12.03 Second 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 Services | 2022/12 |
D13.01 Collection of (at least) 20 curated pathways in a (sub)portal on WikiPathways | Coordinated Access to Data and Services | 2021/12 |
D13.02 Completed pathway analysis workflow (data
analysis including both types of genetic variant linking and network creation) | Coordinated Access to Data and Services | 2022/12 |
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 Services | 2023/06 |
D14.01 First Report of Orphanet nomenclature training for trainers and national trainings | Training and Empowerment | 2020/07 |
D14.02 Orphanet Nomenclature and Ontologies National Trainings | Training and Empowerment | |
D14.03 First Report on course on interpretation of genetic variants and quality standards | Training and Empowerment | 2019/12 |
D14.04 Second Report on course on interpretation of genetic variants and quality standards | Training and Empowerment | 2023/12 |
D14.05 First Report on International course on undiagnosed diseases | Training and Empowerment | 2020/12 |
D14.06 Second Report on International course on undiagnosed diseases | Training and Empowerment | 2023/06 |
D14.07 First Report on sample data management training workshops | Training and Empowerment | 2019/12 |
D14.08 Second Report on sample data management training workshops | Training and Empowerment | 2023/12 |
D14.09 First Report on International course on Rare Disease Registries and FAIRification of data at source | Training and Empowerment | 2019/12 |
D14.10 Second Report on International course on RD Registries and FAIRification of data at the source | Training and Empowerment | 2023/12 |
D15.01 First Report on ExPRESS | Training and Empowerment | 2019/12 |
D15.02
Second Report on ExPRESS | Training and Empowerment | 2023/12 |
D15.03 First Report training patient representatives - scientific innovation and translational research in RD | Training and Empowerment | 2020/12 |
D15.04 Second Report on training of patient representatives on scientific innovation and translational research in RD | Training and Empowerment | 2023/12 |
D15.05 First Report on EURORDIS’ Leadership Programme | Training and Empowerment | 2019/12 |
D15.06 Second Report on EURORDIS’ Leadership Programme | Training and Empowerment | 2023/12 |
D15.07 Training plan for paediatric patients’ in the EJP | Training and Empowerment | 2021/07 |
D16.01 Draft content of the online academic course | Training and Empowerment | 2019/10 |
Del 16.02 Content of the first five online modules | Training and Empowerment | 2021/12 |
D17.01 Results of survey on preferences, needs and resources from the ERNs ecosystem | Training and Empowerment | 2019/09 |
D17.02 EJP RD ERN training programmes | Training and Empowerment | 2019/11 |
D17.03 First Annual report on implementation of training programs | Training and Empowerment | 2020/02 |
D17.04 Second annual report on the implementation of the training program | Training and Empowerment | 2023/12 |
AD37 Report of the first paediatric patient experts training course | Training and Empowerment | 2021/07 |
AD38 Annual report on implementation of training programs | Training and Empowerment | 2021/12 |
AD39 Report on the proposed development and adaptation of training activities | Training and Empowerment | 2022/07 |
AD40 Report on training gaps identified and solutions proposed | Training and Empowerment | 2022/05 |