Endo-ERN ePAGs are involved in all aspects of the work of Endo-ERN. In addition they are very engaged in their own organizations and local community activities. Petra is very involved in the pituitary and adrenal communities and shared the following highlights:
At the national congress of the Network for Pituitary and Adrenal Disorders an event was organized specifically for MEN patients. In addition, there was a lecture on aspects of endocrine surgery in MEN patients and recommendations for screening. Dr Antje Redlich, co-chair of MTG 4 and active in Magdeburg, also gave an interesting lecture on MEN 2. This was the first face-to-face meeting of MTG4 members Petra and Antje as collaboration has only been online to date. Further projects have been discussed online with our new MTG4 co-chair Frédéric Castinetti.
The German Alliance for Rare Diseases ACHSE e.V. has a working group on the integration of ERNs into the national healthcare system. There is particular focus on including patient representation in the German reference networks, some of which already exist or are in the process of being established. The working group is meeting on a regular basis.
