As patients are the primary beneficiaries of the ERN-Skin, they are also closely involved in its workings. The ERN-Skin is involved with 20 patient associations. Members of these associations make up the Patient Representative Council (PRC), which provides the ERN with patient-centric strategic orientations.

Patient representatives nominated by the PRC also sit in each sub-thematic group, as well as on the ERN-Skin Board.

The concrete involvement of patient representatives to build a patient centered ERN-Skin has been shared with every patient representative in the network. They agreed on the following items (non exhaustive list):

  • list the European centers that provide high level patient management for skin diseases
  • associate other patient representatives and develop new patient groups/networks
  • spread information to ensure that all patients with rare diseases have home in an appropriate ERN
  • list the services the ERN-Skin should deliver in addition to the services provided by each ERN-Skin member
  • share information on events
  • circulate information on research projects, clinical trials and therapeutic studies.
  • Participate to clinical trials, collect information on patients in an anonymous way.
  • give advice for improving the quality of care and take part in the survey elaboration/dissemination
  • evaluate on a regular basis the impact of the ERN on the patients’ life
  • create or validate therapeutic education materials/programs
  • participate to the elaboration of guidelines and to the assessment of the needs of all patients
  • propose common projects to improve patient care
  • address transversal rare skin diseases issues/concerns in link with other ERNs in the context of ERN overlaps
  • share 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
  • contribute to the definition of clinical outcomes and of the individual burden
Let's hear from you!

We are constantly working to improve the website and its services. As such, we would greatly appreciate if you could fill this short survey (copy and paste link):