Download: PDF RTF XML Booklet: Review (0) Retrieve Add item
European Reference Network for Rare, Low Prevalence, Diagnosed and Undiagnosed Skin Disorders - Year 2 [ERN-Skin-2] [811324] - Operating Grant
Governance by lead APHP

Start month:1 - End month: 12

- Coordination of the network
- Cooperation with e-PAG
- Organisation, preparation and follow-up of meetings and conference calls
- Dissemination of information
- Update of the ERN-Skin Co...
- Coordination of the network
- Cooperation with e-PAG
- Organisation, preparation and follow-up of meetings and conference calls
- Dissemination of information
- Update of the ERN-Skin Collaborative Platform and public website
- Newsletter
- Liaison between partners
Interactive Directory by lead APHP

Start month:1 - End month: 12

Update of the HCPs services in cooperation with Orphanet
Multidisciplinary Management by lead APHP

Start month:1 - End month: 12

Analysis of available guidelines for each sub-thematic group with patient representatives and overlapping ERNs
Conference calls or meetings with ERN-Skin and other ERNs
Information exchange with scie...
Analysis of available guidelines for each sub-thematic group with patient representatives and overlapping ERNs
Conference calls or meetings with ERN-Skin and other ERNs
Information exchange with scientific societies
Information by lead APHP

Start month:1 - End month: 12

ERN-Skin website update in link with each healthcare provider website and the Geneskin website
Training by lead APHP

Start month:1 - End month: 12

Organisation of the 2nd ERN-Skin course (Nov. 24, Rome, Italy) including practical and e-training.
Patient Education by lead APHP

Start month:1 - End month: 12

Analysis and harmonization of existing patient education programmes
Teledermatology by lead APHP

Start month:1 - End month: 12

- Organisation of 3 panels on the CPMS
- Registration of all HCPs on the CPMS
Cooperation with health care providers from Member States with an insufficient number of patients or lacking technology or expertise by lead APHP

Start month:1 - End month: 12

Identification of 5 teams from Member States with an insufficient number of patients or lacking technology or expertise to participate in the 2018 ERN-Skin
Deep Phenotyping by lead APHP

Start month:1 - End month: 12

- Revision and improvement of the classifications, the choice and definitions of terms
- Development of a common language shared by other ERNs/Scientific networks.
- Discussion among ERNs for ...
- Revision and improvement of the classifications, the choice and definitions of terms
- Development of a common language shared by other ERNs/Scientific networks.
- Discussion among ERNs for test/validation of the description

Rare Skin Disorders Registry by lead APHP

Start month:1 - End month: 12

- Finalization of the mapping of the existing databases to avoid duplication and facilitate the re-use of data
- Identification of solutions to develop a sustainable ERN-Skin registry in link wit...
- Finalization of the mapping of the existing databases to avoid duplication and facilitate the re-use of data
- Identification of solutions to develop a sustainable ERN-Skin registry in link with the European Rare Diseases Registry Infrastructure