BPAN - beta-propeller protein-associated neurodegeneration.
An updated disease description for BPAN is currently in progress. Please be patient a little longer.
The best information on BPAN at the moment can be found here:
- BPAN Wikipedia article (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).
- NBIA Disorders Association website (English)
- Guideline for the treatment of BPAN for physicians (English)
- GeneReviews® review article on NBIA (with linked articles on the main 10 NBIA forms, English).
Current contributions to BPAN
Here you can find current information about this disease variant.
Mulled wine stand in aid 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 in December after a break of two years...
October 12, 2022, online lecture: Understanding hereditary developmental disorders better - what can be learned from the natural history 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 of...
Pilot Grant of $69,775 announced for BPAN research.
The Million Dollar Bike Ride 2022 (Learn more about this fundraiser) raised $69,775, which has now been put out to bid by the Orphan Disease Center for a research project on BPAN. Researchers can apply for a pilot at the following link....
Cycling for BPAN - Million Dollar Bike Ride 2022 again a great success!
Video: NBIA DA It worked again - in 2022, the Million Dollar Bike Ride (MDBR, https://www.milliondollarbikeride.org/) at the University of Pennsylvania in Philadelphia once again far surpassed the US$20,000 mark: Nearly 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 old) and Emily (5 years old). 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 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 Outpatient Children's Hospice Foundation Munich for Rare Disease Day 2022:...
Million Dollar Bike Ride research grant awarded to 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 $66,366 awarded will be given to Young-Ah Seo of the...
Guide with recommendations for the treatment of BPAN available
Researchers from various medical institutions around the world, with the support of affected families, recently published a guide for the treatment of beta-propeller protein-associated neurodegeneration (BPAN). The publication serves in...
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 studies. Scientists led by Dr. Holger Prokisch of the Technical University of Munich have developed a...
RARE-X: A new, secure database for exchanging BPAN health data.
BPAN sufferers and their families are invited to post health information about the disease on the new, secure RARE-X platform. This database is designed to collect information about rare diseases like BPAN and make it available to research to...
