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Promoting Implementation of Recommendations on Policy, Information and Data for Rare Diseases [RD-ACTION] [677024] - Joint Actions
Newsletter
Newsletter Orphanews lead by INSERM - [D.6]
Type: Other
Published on: 19/06/2018

Produce 60 twice-monthly newsletters of the rare disease community
Layman
Layman version of the final report lead by INSERM - [D.9]
Type: Document, reports...
Published on: 31/07/2018

This is a short (e.g. 10 pages) version of the final report, written for the interested public.
Final report lead by INSERM - [D.4]
Type: Document, reports...
Published on: 03/12/2018

This report describes the project implementation and the results achieved. The deliverables are annexed.
Final dissemination report on Sustainable health systems for rare diseases lead by ISS - [D.12]
Type: Document, reports...
Published on: 03/12/2018

Report on the final conference on health systems for rare diseases workshops
Evaluation of the deliverables compared to plans lead by MUW - [D.13]
Type: Document, reports...
Published on: 03/12/2018

This evaluation is based on the reports of WP leaders to the Steering committee
M12,18,24,30,36
2017 Edition of the State of the Art Report lead by UNEW - [D.26]
Type: Document, reports...
Published on: 03/12/2018

Annual Report on key developments in the field, at national and EU levels
Final report on policy delivery and implementation lead by UNEW - [D.27]
Type: Document, reports...
Published on: 03/12/2018

This report will be structured to include specific updates on the thematic areas
Report on Resources to Support the Development and Implementation of Policies within ERNs lead by UNEW - [D.32]
Type: Document, reports...
Published on: 03/12/2018

This report will include all key workshops outputs relative to ERNs
Dissemination of Two editions of the State of the Art Report lead by UNEW - [D.7]
Type: Other
Published on: 31/07/2018

Dissemination of the Annual Report on key developments in the field, at national and EU levels
Delivered at M18&M30
An European integrated master file lead by DIMDI - [D.22]
Type: Other
Published on: 31/07/2018

Table fine-tuned according to the test results and containing all information that was provided by member states over the project period
A set of coding helping tools for rare diseases lead by VR-IIBRD - [D.23]
Type: Other
Published on: 31/07/2018

Electronic sheet and relational DB for the automatic coding of RD (experimentally for a group of RD)
Draft recommendation for routine maintenance lead by APHP - [D.24]
Type: Other
Published on: 31/07/2018

APHP, VENETO, DIMDI
Set of next steps which will help to merge the project results to a long-term maintenance which is stable and available for member states in the draft form of a recommendation.
Orphanet users'survey lead by INSERM - [D.19]
Type: Other
Published on: 19/07/2018

Perform an online survey intended to website’s users
M12,24,36
Orphanet nomenclature with mappings and annotations lead by INSERM - [D.14]
Type: Other
Published on: 19/06/2018

Inventory of RD names, classification, mappings to ICD10, OMIM, SNOMED CT, and others, links to genes, annotations with epidemiological data
M1 to M36 monthly
Web-based knowledge management platform lead by INSERM - [D.15]
Type: Other
Published on: 19/06/2018

Data management facility allowing for suggesting updates, to assess demands, to approve/reject, and to insert into the DB
To be delivered at M12,24,36.
Orphanet DB versionning and differentials between versions lead by INSERM - [D.16]
Type: Other
Published on: 19/06/2018

Produce annual versions with differentials between versions
To be delivered at M12,24,36.
Annual updates of Orphanet knowledge base of expert resources lead by INSERM - [D.17]
Type: Other
Published on: 19/06/2018

Mailing to professionals annually
To be delivered at M12,24,36.
Orphanet Report Series lead by INSERM - [D.18]
Type: Document, reports...
Published on: 19/06/2018

Thematic reports (frequency depending on each report)
To be delivered at M12,24,36
2016 Edition of the State of the Art Report lead by UNEW - [D.28]
Type: Document, reports...
Published on: 21/08/2017

Annual Report on key developments in the field, at national and EU levels
Interim reports lead by INSERM - [D.3]
Type: Document, reports...
Published on: 20/06/2017

This report describes the activities
Carried out, milestones and results achieved in the first half of the project. Deliverables can be attached as annexes.
Will be delivered at M12 and M24.
Reports on the external evaluation of Orphanet lead by MUW - [D.29]
Type: Document, reports...
Published on: 19/06/2017

INSERM-DGS (FR) – MUW

Reports summarizing the independent evaluations of Orphanet by French institutions and by MS representatives
Standard procedures and guide for the coding with Orpha codes lead by APHP - [D.21]
Type: Other
Published on: 09/06/2017

To guarantee comparable datasets from MS, a coding procedure should be clearly defined
Annual meeting & meeting reports lead by INSERM - [D.2]
Type: Document, reports...
Published on: 07/06/2017

Meeting organisation and meeting report.
Delivered M12&M24.
Progress dissemination report on health systems equity lead by ISS - [D.11]
Type: Document, reports...
Published on: 07/06/2017

Report on the sustainable health systems for rare diseases preparatory work (workshop and working group discussions)
Sustainability plan for Orphanet core activities lead by MUW - [D.30]
Type: Document, reports...
Published on: 07/06/2017

INSERM- DGS (FR) – MUW
Development of a modular representation of Orphanet and elaboration of strategies for a secured legal framework and a sustainable funding of Orphanet in the EU
Progress report on policy delivery and implementation lead by UNEW - [D.25]
Type: Document, reports...
Published on: 16/05/2017

This report will be structured to include specific updates on the thematic areas.
ECRD 2016 lead by EURORDIS - [D.31]
Type: Other
Published on: 12/09/2016

2016 sees the 8th year of the ever-growing European Conference on Rare Diseases & Orphan Products. This biennial conference is a unique opportunity to come together and exchange: it is the event at wh...
2016 sees the 8th year of the ever-growing European Conference on Rare Diseases & Orphan Products. This biennial conference is a unique opportunity to come together and exchange: it is the event at which to connect and share with all other members of the rare disease community. The ECRD is the only event which, from its small beginnings, has united all rare disease stakeholders from all European nations- patients and patient representatives, healthcare professionals and researchers, industry, payers, regulators and policy makers alike- in the fight against rare diseases. The ECRD now brings together over 80 speakers and more than 800 participants, covering six themes of content over two days: from the latest research, to developments in new treatments, to innovations in healthcare, social care and support at the European, national and regional levels. New meeting formats to enhance the on-site learning experience will be showcased for the first time in Edinburgh and will include a speed networking session to connect patients, researchers and industry, an open-house “soap box” lunch session, interactive roundtables, audience polling, networking lunches / coffee breaks and dedicated poster sessions. The focus in 2016 will be on Game Changers in Rare Diseases. We will also be holding pre-conference tutorials, which will ensure that you are equipped to learn as much as possible from the conference.


Review document of existing technical implementations for RD coding of MS lead by APHP - [D.20]
Type: Other
Published on: 03/06/2016

Analyse at each MS level the situation for RD coding based on previous general work done through precedent JA. This work includes deep analysis of current and future situation. Existing systems in eac...
Analyse at each MS level the situation for RD coding based on previous general work done through precedent JA. This work includes deep analysis of current and future situation. Existing systems in each country might already give satisfactory data from some RDs. Granularity analysis for further coding requirements.
JA Dissemination plan lead by EURORDIS - [D.5]
Type: Other
Published on: 18/04/2016

Elaborated dissemination plan indicating for each dissemination action :
- what will be disseminated (key message)
- to whom (audience)
- why (purpose)
- how (method)
- when (timing
Leaflet lead by INSERM - [D.8]
Type: Other
Published on: 26/02/2016

A leaflet to promote the project must be produced at the beginning
Website lead by INSERM - [D.10]
Type: Websites, patent filling, videos etc
Published on: 16/12/2015

Dedicated website set up and maintenance
Kick off meeting & report lead by INSERM - [D.1]
Type: Document, reports...
Published on: 10/11/2015

Meeting organisation and meeting report