BPAN - Beta-propeller protein-associated neurodegeneration
An updated disease description for BPAN is currently in progress. Please be patient.
You can find the best information on BPAN here:
- BPAN Wikipedia article (the most up-to-date and best German-language description of BPAN)
- Milly's mission (German, personal story of a BPAN victim and her family)
- BPAN Warriors (comprehensive English-language website on BPAN, created by affected families)
- Website of the NBIA Disorders Association (English)
- Guidelines for the treatment of BPAN for doctors (English)
- GeneReviews® review article on NBIA (with linked articles on the 10 most important NBIA forms, English)
Current articles on BPAN
Here you will find up-to-date information on this disease variant.
NBIA-Gentherapie Updates
Historische Spende von 1,2 Millionen Dollar gibt Treibstoff für PKAN-Gentherapie Eine beeindruckende Spende in Höhe von 1,2 Millionen Dollar hat es der PKAN-Gentherapie (Pantothenat-Kinase-assoziierten Neurodegeneration) ermöglicht, einen großen Schritt nach vorn zu...
Zwei BPAN-Forschungsprojekte durch den MDBR 2023 mit je $60.000 gefördert
Der 10. jährliche Million Dollar Bike Ride (MDBR), der vom Orphan Disease Center der University of Pennsylvania veranstaltet wurde, führte dazu, dass zwei NBIA-Forschende jeweils ein Forschungsstipendium von 60.000 US-Dollar für die Erforschung der...
Insights into BPAN research at the family conference in the USA
BPAN families attending the NBIA Disorders Association (NBIADA) Family Conference in Houston, Texas, in May received updates on BPAN research from four researchers, beginning with Kira Anderson, a study coordinator with the NBIA Disorders Association (NBIADA)....
MDBR sets donation record and makes 2 scholarships possible
The NBIA Disorders team and NBIA families raised a record amount for BPAN research this year as part of the University of Pennsylvania's (UPenn) Million Dollar Bike Ride (MDBR). You can find more information about this charity bike race here:...
BPAN researcher develops stem cell model and awaits funding for planned drug screening
Dr. Paul Lockhart of the Murdoch Children's Research Institute in Melbourne, Australia, says that while his BPAN research has developed an important "brain cell" model using stem cells from affected BPAN individuals, his next step - the...
Cycling for BPAN research - Million Dollar Bike Ride 2023
This year, the Million Dollar Bike Ride (MDBR) at the University of Pennsylvania in Philadelphia is once again raising funds for research into rare diseases. The 10th edition of the charity bike race will take place on June 10, 2023....
Fernsehbeitrag auf 3sat zu seltenen Erkrankungen und BPAN
Zum Tag der Seltenen Erkrankungen, dem 28.02.2023, widmete sich die Wissenschaftssendung NANO des Senders 3sat den Seltenen am Beispiel BPAN. Im Rahmen der Sendung war ein Filmteam bei Familie Nielbock mit Tochter Milly (https://www.millys-mission.de) zu Hause....
Mulled wine stand for the benefit of Hoffnungsbaum and Team Bananenflanke
The Sandbox Friends, Melanie Schratzenstaller, Michael Bogner, Stephan Thalhammer, Stefan Huber, Ramona Klement and Lisa Kaltenecker, from Eberspoint (south of Landshut) organized a mulled wine stand again on the first weekend of December after a break of two years...
October 12, 2022, online lecture: Understanding hereditary developmental disorders better - what you can learn from the natural course of the disease
Steffen Syrbe is a pediatric neurologist and Professor of Pediatric Epileptology at Heidelberg University Hospital. He has been working with children with neurodevelopmental disorders for over 15 years. During this time, he has developed a strong interest in genetic causes...
Pilot Grant in the amount of $69,775 announced for BPAN research
The Million Dollar Bike Ride 2022 (more information on this fundraising campaign) raised $69,775, which the Orphan Disease Center is now offering for a research project on BPAN. Researchers can apply for a pilot project at the following link.
