Endo-ERN is happy to welcome a new ePAG to the organisation. Bernd Rosenbichler of Alström Syndrom e.V., Germany has joined MTG3. He shares his motivation to join Endo-ERN:
“Raising a child with a rare disease is – that may come as a surprise – a gift by nature. It changes the own perspectives on life, set priorities and opens the mind for totally different things, someone would have never recognized if there wasn’t such a special person.
But of course there is as well the reality of dealing with a rare disease: feeling left alone, not knowing where to get support or who to talk to. Questions, no one can answer. Desperate moments and fear. Single persons standing against a health system that is not defined to help individuals with rare and often unknown diseases.
Based on those experiences I learned about the value and power of collaboration. The need to build strong networks. Globally, across regional boundaries. To find those, willing to support and fight for a better future.
The ERN-ENDO network offers the opportunity, to get involved in one of the biggest networks. To share our experiences but also contribute to the huge puzzle we are all working on.”
