The first few days, weeks and months after a BPAN diagnosis can be overwhelming. The process of digesting the full implications of a BPAN diagnosis, the daunting task of understanding a condition which currently affects such few people worldwide, seeking sound medical direction while providing the quality daily medical care is no easy task. As with many ultra-rare medical conditions, resources may be limited or all-together unavailable. Our BPAN Warrior Community has a wealth of experience which we hope to share with you.
Although we are all unique, our common experiences often provide us with invaluable information, direction, reassurance and most importantly HOPE. Each step we take towards connecting with others may help you move forward in this BPAN Journey and closer to understanding the vital role you play as a member of our community.
WHERE TO BEGIN
Stay informed through NBIA Disorders Association, a resource for education, advocacy, research news and family support for Neurodegeneration with Brain Iron Accumulation
Take a deep breath and then start your BPAN Education. Explore our BPAN Warriors Website, social media pages, YouTube Channel and look through some of the many scientific journal articles and reviews available online.