EHE patients in Germany have been in communication with each other for many years, but have now decided that they want to create a more coordinated and official patient group, launching a new German Instagram page.
“Welcome to our new page. This is of course open to everyone: patients, doctors, researchers and relatives. Feel free to stop by.”
There is a lot going on in the German patient group with patients and their supporters willing and keen to join forces. The group is continuing to asses how they can best support the whole EHE community and make EHE more visible in Germany. The new Instagram account is one of the outcomes but there is definitely more to come.
Timing is perfect as the EHERCC is relaunching its initiative to create a dynamic pan-European EHE patient community.