The 3rd edition of the European Reference Network-(ERN) Skin live training was held in Ghent, Belgium on the 16th of December. The course, accredited by the UEMS (European CME credits) focused on: mendelian connective tissue disorders, cutaneous diseases related to DNA repair disorders, hidradenitis suppurativa, cutaneous mosaic disorders, naevi and nevoid skin disorders, complex vascular malformations. The ePAG Skin addressed patient needs and the importance of patient-centred care.
Together with three other panel members from different countries, we explained and discussed the topic ‘patient burdens in rare skin disorders – what do physicians need to know?’.
‘Nothing about us without us!’
Collaboration between doctors and patients (organisations) is crucial! Who is actually the real expert?