ERN skin

Patient Representatives’ role and responsibilities in ERN-Skin

Patient Representatives, gathered in the Patient Representative Council (PRC) are implicated at all levels of ERN-Skin so that the network activities are the true reflection of patients’ needs. Patients’ voice must be at the heart of the network’s aims. That is why each disorder or group of disorders will be represented. Patient representatives will have to get involved at all levels :

  • Listing the European centers that provide high levels of patient management ;
  • Developing new patient groups/networks ;
  • Spreading information for patients, but also on research projects, clinical trials, therapeutic studies as well as all events ;
  • Listing the services the ERN-Skin should deliver in addition to the services provided by each member of the network ;
  • Participating to clinical trials, collecting information on patients, anonymously ;
  • Giving advice for improving the quality of care ;
  • Evaluating on a regular basis the impact of the ERN on the patient’s life ;
  • Creating or validating therapeutic education materials/programs ;
  • Participating in the elaboration of guidelines and in the assessment of all patients’ needs;
  • Proposing common projects to improve patient’s care ;
  • Addressing transversal rare skin diseases issues/concerns in link with other ERNs ;
  • Sharing tools/services developed within the patient groups and useful to every patient in the ERN-Skin as well as for patients with unknown disease and who could be concerned by the ERN-Skin ;
  • Contributing to the definition of clinical outcomes and of the individual burden ;
  • Proposing communication activities ;
  • Contributing to the development and analysis of a patient experience survey ;
  • Translating and adapting ERN-Skin guidelines to local needs jointly with health care providers ;
  • Informing patients on their rights and how to use them in practice ;
  • Liaising with other patient group representatives and organisations such as Eurordis or EPF (European Patients Forum) ; And
  • Disseminating research results to the community.

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