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 […]

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BPANready has been launched!

We are excited to have BPAN families participate in this important natural history study of BPAN that will help lay the foundation for future clinical trials. The link below will take you to a landing page that explains more about how the study works and what is involved. After you look it over, click on […]

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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 […]

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Announcement: 2016 BPAN Research Meeting!

Our team is excited to announce that we will be hosting a BPAN research meeting in Portland, Oregon from June 24th-26th! We are thrilled to welcome you to our hometown and have planned a variety of activities including research activities, social events, a mini-symposium, and individual appointments with Dr. Hayflick and Dr. Hogarth. For more […]

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The Case Of The Mysterious BPAN Gene

The process of gene discovery can be a difficult concept for many people to comprehend. Just trying to understand a genetic condition after receiving a diagnosis can be a challenge. However, understanding the science behind that condition can help patients and their families grasp what goes on behind the scenes and why research takes so […]

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