Dagmara Kirsch
Manager de Comunitate
Hello, my name is Dagmara. I am married and a proud mother of two children, including my daughter Emma, who is affected by the rare genetic defect LMBRD2. About three years ago, we received the diagnosis - a moment that changed our lives. At that time, I had no contact with other affected families, and there was hardly any information to be found online.
To change this, I founded the Facebook group and got in touch with Antonio and his wife right from the beginning. Since then, our community has been steadily growing, so much has happened, and together we have already achieved a lot. I also take care of our Facebook group, where we share a very familiar, open, and supportive atmosphere.
I am deeply grateful for all of this - especially because today we know: we are no longer alone.


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