BPAN – Beta-Propeller Protein-Associated Neurodegeneration
An updated description of BPAN is currently in progress. Please be patient.
The best information currently available on BPAN can be found here:
- BPAN-Wikipedia article (most up-to-date and best German-language description of BPAN)
- Milly's mission (German, personal story of a BPAN sufferer and her family)
- BPAN-Warriors (comprehensive English-language website about BPAN, created by affected families)
- Website of the NBIA Disorders Association (English)
- Guideline for the treatment of BPAN for physicians (English)
- GeneReviews® review article on NBIA (with linked articles on the 10 most important NBIA forms, English)
Current articles on BPAN
Here you can find the latest information on this disease variant.
BPAN research project in Cologne - inspired by reports from families
Five NBIA patient organizations from Germany, Italy, the Netherlands, Poland and the USA have joined forces to fund a research project with 100,000 euros over two years. The project is investigating a possible mechanism for a temporary...
NBIA gene therapy updates
Historic $1.2 million donation provides fuel for PKAN gene therapy An impressive $1.2 million donation has enabled pantothenate kinase-associated neurodegeneration (PKAN) gene therapy to take a major step forward....
Two BPAN research projects funded by MDBR 2023 with $60,000 each
The 10th annual Million Dollar Bike Ride (MDBR), hosted by the University of Pennsylvania's Orphan Disease Center, resulted in two NBIA researchers each receiving a $60,000 research grant to study the...
Insights into BPAN research at the family conference in the USA
BPAN families who attended the NBIA Disorders Association (NBIADA) family conference in Houston, Texas in May received current insights into BPAN research from four researchers. Kira Anderson, a study coordinator at...
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 from 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 is...
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....
TV report on 3sat about rare diseases and BPAN
On Rare Disease Day, 28.02.2023, the 3sat science program NANO was dedicated to rare diseases using the example of BPAN. As part of the program, a film crew visited the Nielbock family and their daughter Milly (https://www.millys-mission.de) at home....
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 neurological development disorders for over 15 years. During this time, he has developed a strong interest in genetic causes...
