NEWLY DIAGNOSED

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

STEP 1

REGISTER WITH NBIACURE.ORG

 

Leading research scientists in NBIA, BPAN and related disorders, will help keep you up-to-date about new studies, clinical trials and research findings (NBIACure.org - Molecular & Medical Genetics Oregon Health & Science University)

STEP 2

LEARN MORE ABOUT ALL NBIA DISORDERS AT NBIADISORDERS.ORG

 

Stay informed through NBIA Disorders  Association, a resource for education, advocacy, research news and family support for Neurodegeneration with Brain Iron Accumulation

STEP 3

ARM YOURSELF WITH KNOWLEDGE - LEARN MORE ABOUT BPAN

 

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.

STEP 4

TALK TO OTHERS

CONNECT WITH OUR BPAN FAMILY SUPPORT GROUP

 

Need to ask questions? Want to share your story? Or, just need a safe place to place to unload. Join our BPAN Facebook Group