ERN-Skin presentation at the ESPD meeting
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:
- 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.
- Providing reliable and harmonised information via the interactive map.
- 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
- Sharing and spreading harmonised procedures and best practices within and outside the network
- Developing health care providers’ skills to manage patients with rare skin diseases, with the annual training session and an upcoming e-training program
- Empowering patients and teaching them how to manage their disease
- Facilitating the mobility of expertise
- 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
- Developing disease terminology among multidisciplinary teams, with a new tool under development: the Skin Phenotyping Ontology and Terminology Code (SPOT) app.
- Developing research and epidemiological surveillance, and paving the way for the implementation of clinical trials.