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Newsletter from Hoffnungsbaum e.V.

Association for the Promotion of Research and Treatment of NBIA

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Call for BPAN: Million Dollar Bike Ride 2020 Pilot Grant Program

The Orphan Disease Center (ODC) intends to fund 38 research projects spread across 29 different rare diseases. The funds were raised as part of the Million Dollar Bike Ride and matched in part by the University of Pennsylvania. As we previously reported, just under $ 71,500 is available for BPAN, for which researchers from all over the world have signed up from today until 26.10.2020 at the latest.

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Hoffnungsbaum e.V. finances MPAN project at Helmholtz Zentrum München

Hoffnungsbaum e.V. awards funding of € 151,540 to Dr. Arcangela Iuso and her team from the Institute of Neurogenomics at the Helmholtz Centre in Munich. The funding will finance a 27-month research project to uncover key disease mechanisms in MPAN (mitochondria-membrane-protein-associated neurodegeneration). Project leader Dr. Arcangela Iuso, an experienced MPAN researcher, and her team are investigating the role of the C19orf12 gene.

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Please take part in the Hoffnungsbaum survey!

Dear NBIA Families, Members and Friends of Hoffnungsbaum e.V., our patient organization for NBIA sufferers and their families has been around for almost 18 years. To the best of our knowledge and belief, we provide you with information and promote NBIA research and the establishment of NBIA treatment centers in a variety of ways. So far, we have been able to hold eight family conferences, enabling numerous NBIA families to meet in person.

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Spontaneous donation campaign achieves more than 15.000 € for PKAN research

Spontaneous donation campaign achieves more than 15.000 € for PKAN research
The Bianchi family was diagnosed with PKAN last year for their now 3-year-old son Giulio. The parents then launched a fundraising campaign via PayPal and a Christmas card campaign in the private environment for the benefit of PKAN research and by wearing self-designed T-shirts with the logo "Fight NBIA" on the illness of their youngest son and on Hoffnungsbaum e.V. attentive. The...

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Hoffnungsbaum e.V. – Association for the Promotion of Research and Treatment of NBIA
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