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Orphanet Network [ONW] [831390] - Project
Layman
Layman verison final report lead by INSERM - [D.19]
Type: Document, reports...
Published on: 08/12/2021

This is a short (e.g. 10 pages) version of the final report, written for the interested public as a target group.

Other deliverables - 19 output(s)

Stakeholders survey report lead by INSERM - [D.7]
Type: Document, reports...
Published on: 14/12/2021

Report on anonymized survey results of the stakeholder survey carried out in the project and analysis compared to 2017.
Cartographic representation of resources related to ERNs lead by INSERM - [D.3]
Type: Document, reports...
Published on: 10/12/2021

Cartographic representation of resources related to ERNs
Sustainability plan updated lead by INSERM - [D.4]
Type: Document, reports...
Published on: 08/12/2021

This plan will contain information on the project, an update of the overview of the sustainability planning process, an update of the action plans per priority domain as well as a sustainability foll...
This plan will contain information on the project, an update of the overview of the sustainability planning process, an update of the action plans per priority domain as well as a sustainability follow up section.
Dissemination Activities report lead by INSERM - [D.5]
Type: Document, reports...
Published on: 08/12/2021

Report on dissemination activities, including articles and presentations at workshops and conferences »
Evaluation report lead by INSERM - [D.6]
Type: Document, reports...
Published on: 08/12/2021

Report containing (1) the analysis of all relevant, task-related indicators as outlined in section 2.2 (“Specific objectives of the action”), methods and means, as well as (2) the analysis of the ...
Report containing (1) the analysis of all relevant, task-related indicators as outlined in section 2.2 (“Specific objectives of the action”), methods and means, as well as (2) the analysis of the KPI and of the planned intended satisfaction surveys
Report on the production of Nomenclature in English lead by INSERM - [D.8]
Type: Document, reports...
Published on: 08/12/2021

This report will list all terms created or modified with indication of the Orphacode
Report on the alignments with other terminologies, to genes and genetic databases lead by INSERM - [D.9]
Type: Document, reports...
Published on: 08/12/2021

This report will contain the number of new and updated alignments per target nomenclature, and the % of coverage of the Orphanet RD nomenclature by the target nomenclatures
Report on RD epidemiological database of epidemiological data lead by INSERM - [D.10]
Type: Document, reports...
Published on: 08/12/2021

List of new and updated diseases annotated to each category of epidemiological data, dissemination tools and download statistics; percentage of coverage of RD with each category
Report on Orphan products Database lead by INSERM - [D.11]
Type: Document, reports...
Published on: 08/12/2021

List of new and updated diseases linked to orphan products, dissemination tools and download statistics; percentage of coverage of RD with medicinal products
Orphanet Encyclopaedia report lead by INSERM - [D.12]
Type: Document, reports...
Published on: 08/12/2021

Report on new and updated texts produced and on external texts assessed and disseminated
Report of annual updates of the expert resources inventory lead by INSERM - [D.13]
Type: Document, reports...
Published on: 08/12/2021

Report of annual updates of the expert resources inventory
Report on quality management lead by INSERM - [D.14]
Type: Document, reports...
Published on: 08/12/2021

Report on quality management actions and results including trainings at mid-term and end of the project
Report on the work of OOC lead by INSERM - [D.15]
Type: Document, reports...
Published on: 08/12/2021

Executive summaries of all OOC meetings.
Report on the collaboration with ERNs lead by INSERM - [D.16]
Type: Document, reports...
Published on: 08/12/2021

This report will summarize the actions undertaken towards collaboration with ERNs as well as the results of the collaboration.
Leaflet 2 lead by INSERM - [D.18]
Type: Document, reports...
Published on: 08/12/2021

A leaflet in A4 format (1-2 pages maximum) in a layman language to promote the main output and results of the project.
Annual meeting executive summary lead by INSERM - [D.2]
Type: Document, reports...
Published on: 27/02/2020

This executive summary will include all items discussed during the meeting/workshop, as well as the agreed work plan and dissemination plan.
Kick Off Workshop executive summary lead by INSERM - [D.1]
Type: Document, reports...
Published on: 12/12/2018

This executive summary will include all items discussed during the meeting/workshop, as well as the agreed work plan and dissemination plan.
Leaflet lead by INSERM - [D.17]
Type: Document, reports...
Published on: 12/12/2018

A leaflet to promote the project must be produced at the beginning
website lead by INSERM - [D.20]
Type: Websites, patent filling, videos etc
Published on: 12/12/2018

Project web-page available on orpha.net. private website network.orpha.net