YOU ARE NOT ALONE
our shared stories
our shared strength
our shared hope
Welcome to BPAN Warriors. Whether you are a parent of a child recently diagnosed with BPAN (Beta-Propeller Protein-Associated Neurodegeneration) or you are a family member, friend, community advocate or healthcare provider who has been touched by someone who lives with this ultra-rare genetic condition, we welcome you.
BPAN Warriors is a growing international community of individuals who have loved ones directly affected by BPAN. We strive to provide parents, siblings, family members, friends, caregivers and medical professionals, a safe and compassionate online forum to exchange information and provide easier access to scientific research and community resources. Most importantly, we hope that through CONNECTION, we may bolster you as you traverse this often complicated medical journey.
Together "WE CAN" meet the challenges that we may encounter on this BPAN Journey.
Need to ask questions?
WANT TO SHARE YOUR STORy?
JUST NEED A SAFE PLACE TO UNLOAD?
BPAN FACEBOOK PAGE
(Families of BPAN, a subtype of NBIA)
With such a small number of people diagnosed with BPAN, our support to each other is invaluable. Professionals in the medical field are welcome to join. Feel free to ask questions, post resources, share or whatever. This is a closed group and people must be approved before being a member.
YOU ARE NOT ALONE
TOGETHER "WE CAN" MEET THE CHALLENGES THAT WE MAY ENCOUNTER ON THIS BPAN JOURNEY
Learn about other BPAN families as they share their stories and their personal experiences. Hear about the first days and months after receiving a BPAN diagnosis. Begin to identify with others who know what it means to overcome obstacles. CONNECT with our BPAN Warrior Tribe and let our commUNITY provide you with inspiration, courage and HOPE.
LEARN HOW YOUR TAX DEDUCTIBLE DONATION CAN MAKE DIFFERENCE TODAY
BPAN Warriors is a not-for-profit 501(c)(3) organization. Donations are tax-deductible.
Our Federal Tax ID number is 82-3976283.