ERN-Skin presentation at the ESPD meeting

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Prof. Christine Bodemer, the ERN-Skin coordinator, gave a presentation on the ERN-Skin at the European Society for Paediatric Dermatology’s 18th annual meeting, which was held in London on 7-9 June 2018.

After a short explanation of the ERN-Skin, the presentation gave an overview of how the ERN-Skin is fufilling its ten objectives:

  1. Building a durable network for every patient, through frequent exchanges of information between the ERN-Skin’s various bodies, and between the ERN-Skin and other ERNs and scientific societies.
  2. Providing reliable and harmonised information via the interactive map.
  3. Developing and promoting an expert multidisciplinary management, by cooperating with other ERNs on guidelines and other practical documents and making use of the Clinical Patient Management System
  4. Sharing and spreading harmonised procedures and best practices within and outside the network
  5. Developing health care providers’ skills to manage patients with rare skin diseases, with the annual training session and an upcoming e-training program
  6. Empowering patients and teaching them how to manage their disease
  7. Facilitating the mobility of expertise
  8. Helping Member states with insufficient number of patients or lacking technology or expertise to provide highly specialised services, with grants allowing healthcare professionals to participate in the annual courses
  9. Developing disease terminology among multidisciplinary teams, with a new tool under development: the Skin Phenotyping Ontology and Terminology Code (SPOT) app.
  10. Developing research and epidemiological surveillance, and paving the way for the implementation of clinical trials.

 

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