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European Reference Network for Rare, Low Prevalence, Diagnosed and Undiagnosed Skin Disorders - Year 3 to 5 [ERN-Skin] [838437] - Operating Grant
Coordination of the action by lead AP-HP

Start month:1 - End month: 36

Build a durable ERN-Skin involving the best experts and covering the largest possible number of diagnosed but also undiagnosed rare and low prevalence skin disorders so that every patient finds a home...
Build a durable ERN-Skin involving the best experts and covering the largest possible number of diagnosed but also undiagnosed rare and low prevalence skin disorders so that every patient finds a home in the ERN-Skin
Dissemination by lead AP-HP

Start month:1 - End month: 36

- Dissemination of information
Update the dissemination plan
Disseminate the project deliverables
Update the ERN-Skin Collaborative Platform and public website in link with each healthcare provider a...
- Dissemination of information
Update the dissemination plan
Disseminate the project deliverables
Update the ERN-Skin Collaborative Platform and public website in link with each healthcare provider and patients’
Publish a Newsletter



Evaluation of the action implementation by lead AP-HP

Start month:1 - End month: 36


- Assess the stakeholders’ views
- Monitor the implementation of Year 3 to 5 activities according to the road map
- Ensure the quality of the deliverables: linked to the objective, delivered on ti...

- Assess the stakeholders’ views
- Monitor the implementation of Year 3 to 5 activities according to the road map
- Ensure the quality of the deliverables: linked to the objective, delivered on time, easily understandable by professionals, patients and general public
- Disseminate a questionnaire on patient satisfaction
- Take corrective measures if problems have arisen
Interactive Directory by lead AP-HP

Start month:1 - End month: 36

Update of the HCPs services in cooperation with Orphanet
Multidisciplinary Management by lead AP-HP

Start month:1 - End month: 36

- Identify available guidelines and recommendations at the ERN-Skin level, at the ERN level, at the Scientific Societies level, at patient support group level
- Elaborate an ERN-Skin methodology for d...
- Identify available guidelines and recommendations at the ERN-Skin level, at the ERN level, at the Scientific Societies level, at patient support group level
- Elaborate an ERN-Skin methodology for developing / accrediting these guidelines and recommendations
- Use template proposed by the EC in the framework of the call for tender “Taxonomy and templates for ERN documents”
Training by lead AP-HP

Start month:1 - End month: 36

- Identification of the hosting countries
- Elaboration of the programme with the chairs of each thematic and transversal group
- Practical organisation of the including practical and e-training
Patient Education by lead AP-HP

Start month:1 - End month: 36

- Identify available patient education tools for each group of diseases
- Elaborate an ERN-Skin methodology for developing / accrediting these education programmes
- Use template proposed by the EC in...
- Identify available patient education tools for each group of diseases
- Elaborate an ERN-Skin methodology for developing / accrediting these education programmes
- Use template proposed by the EC in the framework of the call for tender “Taxonomy and templates for ERN documents”
Teledermatology – Clinical Patient Management System by lead AP-HP

Start month:1 - End month: 36

- Organisation of panels on the CPMS
- Registration of new healthcare providers on the CPMS
Cooperation with health care providers from Member States with an insufficient number of patients or lacking technology or expertise by lead AP-HP

Start month:1 - End month: 36

Launch an open call to identify at least 5 teams from Member States with an insufficient number of patients or lacking technology or expertise to participate in the 2019, 2020, 2021 ERN-Skin
Deep Phenotyping by lead AP-HP

Start month:1 - End month: 36

Develop, test and use the SPOT App at the ERN-Skin and ERN level
Rare Skin Disorders Registry by lead AP-HP

Start month:1 - End month: 36

- Identification of the available registries at the local, national and international level
- Meeting and conference call of the ERN-Skin registry group and the European Rare Diseases Registry Infrast...
- Identification of the available registries at the local, national and international level
- Meeting and conference call of the ERN-Skin registry group and the European Rare Diseases Registry Infrastructure
- Development of the ERN-Skin registry in link with the European Rare Diseases Registry Infrastructure