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European Reference Network for Rare, Low Prevalence, Diagnosed and Undiagnosed Skin Disorders - Year 2 [ERN-Skin-2] [811324] - Operating Grant
Newsletter
4.3. Bi-Annual Newsletter lead by APHP - [D.13]
Type: Document, reports...
Published on: 22/05/2019

ERN-Skin life: news on each of the sub-thematic and transversal groups, focus on the Patient Representative Council
5.5. e-learning section on the ERN-Skin website lead by APHP - [D.16]
Type: Websites, patent filling, videos etc
Published on: 26/06/2019

Hosting and inclusion of the videos recorded during the 2018 ERN-Skin course
6.3. Strategy report for harmonised patient education programmes and tools lead by APHP - [D.17]
Type: Document, reports...
Published on: 26/06/2019

Strategy for harmonised patient education programmes and tools.
7.3. Report on the practical use of CPMS lead by APHP - [D.18]
Type: Document, reports...
Published on: 26/06/2019
Virtual Consultations for the 3 ERN-Skin panels
8.1. List of the 5 HCP nominees invited to participate in the 2018 ERN-Skin course (travel and accommodation covered) lead by APHP - [D.19]
Type: Document, reports...
Published on: 26/06/2019

List of the HCP nominees from Member States with insufficient number of patients or lacking technology or expertise to provide highly specialised services, eligible to participate in the 2018 ERN-Skin...
List of the HCP nominees from Member States with insufficient number of patients or lacking technology or expertise to provide highly specialised services, eligible to participate in the 2018 ERN-Skin Course.
9.2. Deep Phenotyping meeting minutes lead by APHP - [D.20]
Type: Document, reports...
Published on: 26/06/2019

Minutes of the meeting of the "Deep Phenotyping" transversal group
10.2. Registry Report lead by APHP - [D.21]
Type: Document, reports...
Published on: 26/06/2019

Minutes of the meeting of the "e-health and registry" group focusing on registry issues
1.1.1. ERN-Skin Activity & Evaluation Report lead by APHP - [D.1]
Type: Document, reports...
Published on: 22/05/2019

Report on the ERN-Skin achievements – Evaluation Report
1.1.3. Executive Committee meeting minutes lead by APHP - [D.2]
Type: Document, reports...
Published on: 22/05/2019

Validation of the working plan of each sub-thematic group
1.1.5. Sub-thematic groups meeting minutes lead by APHP - [D.3]
Type: Document, reports...
Published on: 22/05/2019

Validation of the Year 3 working plan
1.1.8. PRC minutes lead by APHP - [D.4]
Type: Document, reports...
Published on: 22/05/2019

Recommendations of ERN-Skin Patient Representatives
1.2.1. List of specific criteria lead by APHP - [D.5]
Type: Document, reports...
Published on: 22/05/2019

Specific criteria defined for each of the 4 new sub-thematic groups
1.2.2. List of new HCP (organization) members and affiliates lead by APHP - [D.6]
Type: Document, reports...
Published on: 22/05/2019

HCP (organization) complying with ERN-Skin specific criteria and endorsed by their national authorities + affiliated partners
2.3. List of diseases covered by each health care provider included in the interactive directory lead by APHP - [D.7]
Type: Websites, patent filling, videos etc
Published on: 22/05/2019

New functionality of the interatcive directory with a list of diseases covered by each health care provider
3.1.3. Strategy for updated guidelines at 5 years lead by APHP - [D.8]
Type: Document, reports...
Published on: 22/05/2019

Strategy for updated guidelines at 5 years for each sub-thematic group of diseases
3.2.4. Common strategy for recommendations and research programmes lead by APHP - [D.9]
Type: Document, reports...
Published on: 22/05/2019

Complementary and multidisciplinary approach to the road map for the elaboration of guidelines and research programmes
3.3.1. Report on collaborative projects with European and International Scientific Societies lead by APHP - [D.10]
Type: Document, reports...
Published on: 22/05/2019

Report on the interaction between the EADV Task Forces, the EDF research networks, the ESPD, the ILDS.
4.1. ERN-Skin Dissemination Plan lead by APHP - [D.11]
Type: Document, reports...
Published on: 22/05/2019

Dissemination plan of the ERN-Skin
4.2. Updated Website second version lead by APHP - [D.12]
Type: Websites, patent filling, videos etc
Published on: 22/05/2019

Website update
5.3. Programme of the 2018 Course lead by APHP - [D.14]
Type: Document, reports...
Published on: 22/05/2019

Programme of the 23 Nov. 2018 course in Rome, Italy
5.4. Strategy for the development of practical training in each country lead by APHP - [D.15]
Type: Document, reports...
Published on: 22/05/2019

Analysis of the services available in the 18 partner countries to develop practical training