ERN-skin virtual board meeting
The following was discussed:
- A patient survey in (7 languages) for the ERNs (hospital) is finalized
- CPMS (clinical patient management system), where doctors and patients can consult each other online is not yet working. A helpdesk was launched.
- A registry project is launched to connect and share sufficient data for Rare skin disease studies – to do more research.
- The ERN-skin website is updated
- The patient representatives have shared the patient journeys – our patient journey for CMN!
The working group to which CMN belongs (Mosaic working group) has worked on and finalized:
- FAQ for mosaicism
- Leaflet for patients: Cutaneous mosaic disorders nevi&nevoid skin disorders and complex vascular malformations
- Patient questionnaire and video for patients