BPAN WARRIORS TERMS & CONDITIONS OF USE
Last Updated: January 7, 2020
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YOU ARE NOT ALONE
Welcome to BPAN Warriors. Whether you are a parent of a child recently diagnosed with BPAN (Beta-Propeller Protein-Associated Neurodegeneration), a researcher with interest in the ultra-rare disease 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 the only U.S. based nonprofit dedicated exclusively to the global BPAN community. It is estimated that there are between 2,600-10,000* patients living with BPAN worldwide.
With the explosion in BPAN cases worldwide, now more than ever it is critical to collaborate and mobilize our international community of patients, parents/caregivers and researchers and clinicians to accelerate a cure for BPAN.
TURNING HOPE INTO ACTION
CONNECT | COLLABORATE | CURE
Ongoing BPAN community connection, engagement and patient advocacy, collaborative research and access to meaningful resources and patient education is at the heart of BPAN Warriors. We invest heavily in supporting the development of integrated solutions and delivering reliable tools to those who need them most. Discover more about our new BPAN RACE patient-centered campaigns.
BPAN RACE COMMUNITY DIRECTORY
STAY INFORMED AND LEARN ABOUT RESEARCH OPPORTUNITIES
With our growing global community, now more than ever, we are dedicated to ensuring that all our BPAN families in the United States and internationally have access to patient-centered resources, print and digital materials, upcoming events, and updates on advances made in research, patient care and advocacy. We are only as strong as our connection to our BPAN community.
OUR EXPERIENCE, STRENGTH AND HOPE
If you are a parent of a child who has recently been diagnosed with BPAN, please know that YOU ARE NOT ALONE. We, have been exactly where you are today, filled with questions, overwhelmed by fear of the unknown, feeling the urgency to "do" something, anything. Each BPAN family has their own unique story. Receiving a formal BPAN diagnosis for many has been a medical odyssey, a diagnosis which for some has taken years, sometimes decades to receive. Today, through our shared experience and our shared stories, we hope that you know that you never have to do this alone.
WE NEED YOUR COLLABORATION TO ACCELERATE A CURE
Through our new BPAN Research and Collaborative Exchange, we have the potential to make a real and positive change in the community. With the support of both the clinical care and research community, we can provide meaningful change in the quality of life for BPAN patients and caregivers. Get in touch with us today and see how you can lend a helping hand with this program.
GET INVOLVED TODAY
PRIORITIZING AND TACKLING THE TOUGH ISSUES
At BPAN WARRIORS we’re raising funds and promoting initiatives to serve the people who need them most. We believe in taking action with urgency in order to raise public awareness about some of the most pressing issues facing our community today. We cannot do it alone and need your support.