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