Cases max. in Germany


Cases estimated worldwide


year discovered


donations collected


Little girl on a big mission

On these pages you will meet our daughter Emilia, called Milly. Milly has the rare and so far incurable disease BPAN. The disease has a severe neurodegenerative course. Neurodegeneration in the case of BPAN means epileptic seizures, pain and multiple disabilities over many years. At the final stage, young people suffer from severe dementia, characterised by the loss of all abilities and usually early death.

Our aim is to increase public awareness of BPAN and to raise funds to finance BPAN research. This is because the German health system largely abandons children like Milly and makes hardly any funds available to finance research. We ask for your support: Please help us to give Milly and hundreds of other affected children and young adults a future worth living.