Category Archives: news


Is BPAN the Most Common NBIA Disorder?

This article and other news can be found in the latest issue of our newsletter which can be downloaded/viewed here: June 2018. No one can say exactly how many people in the world have a NBIA disorder, but we can guess based on how many people have been diagnosed so far. Today, PKAN is the […]


Introducing the Spoonbill Foundation

As promised, here are updates on the fundraising questions you had about CoA-Z, the possible treatment of PKAN that we are developing. Our goal is to make CoA-Z available to everyone at the lowest cost possible so we have formed sister non-profit foundations in the Netherlands and US to further develop the compound. The link […]


“Best Practices in PKAN” is now published!

Our team is excited to announce that we and several of our collaborators have developed a set of guidelines called “Best Practices in PKAN.” These guidelines provide recommendations and instructions for taking care of a child or adult with PKAN. They will be a valuable resource for patients themselves and for any doctors they may […]


Upcoming: The 2017 NBIA Scientific Meeting

This upcoming scientific meeting will allow researchers studying NBIA disorders to come together to share their findings, discuss potential therapeutics and plan projects/collaborations. The 6th International Symposium on NBIA & Related Disorders will taken place April 7th-8th, 2017 at Skamania Lodge in Stevenson, WA. If you are a researcher studying NBIA and related disorders, please […]


Summary of 2016 BPAN Research Meeting

A summary of the 2016 BPAN Research Meeting in Portland is now up on our website! Check it out to learn about what we did, see lots of pictures of the wonderful children and families who attended and read the research updates we shared at the symposium. We can’t say thank you enough to everyone […]


PKAN Best Practices Feedback Request

Last year at the family conference, Dr. Hayflick announced that work had begun on a set of guidelines called “Best Practices in PKAN” that would provide recommendations and instructions for taking care of a child or adult with PKAN. This project was funded by the NBIA Disorders Association, Hoffnungsbaum, e.V., and Associazione Italiana Sindromi Neurodegenerative […]