representing CMN at Eurordis ERN skin meeting

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

 

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