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 variant of the disease.
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....
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 $69,775, which the Orphan Disease Center is now offering for a research project on BPAN. Researchers can apply for a pilot project at the following link.
Cycling for BPAN - Million Dollar Bike Ride 2022 a complete success again!
Video: NBIA DA It worked again - in 2022, the Million Dollar Bike Ride (MDBR, https://www.milliondollarbikeride.org/) of the University of Pennsylvania in Philadelphia was able to far exceed the US$ 20,000 mark: Almost US$ 39,000 was raised...
German-British family takes up the fight with BPAN
Kelly Sayers and Oliver Feiler are parents of two children: Max (8 years) and Emily (5 years). The family lives near London, England. 1 ½ years ago, they received the devastating news that Emily had BPAN. BPAN...
Board member Noah Rusch gives an interview on Rare Disease Day
Noah Rusch gives insights into the challenges and family life with his son Laurin, who suffers from BPAN, in an interview. The interview was published by the Munich Outpatient Children's Hospice Foundation to mark Rare Disease Day 2022:...
Million Dollar Bike Ride research grant awarded for BPAN
The Center for Rare Diseases at the University of Pennsylvania, supported by the NBIA DA, has awarded a research grant to study the role of iron in the NBIA disease BPAN. The announced $66,366 will be awarded to Young-Ah Seo of the...
Guideline with recommendations for the treatment of BPAN available
Researchers from various medical institutions around the world, with the support of affected families, have recently published a guide to the treatment of beta propeller protein-associated neurodegeneration (BPAN). The publication serves as a...
New BPAN mouse model from Munich now available for researchers
With the publication of a long-awaited paper on a BPAN mouse model, researchers around the world now have access to these mice for study. Scientists led by Dr. Holger Prokisch from the Technical University of Munich have developed a...
