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SHARE YOUR STORY

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.

#WRDD2021 BPAN WARRIORS
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THE FACES OF BPAN - BPAN Warriors Website Launch Video
02:47
La historia de Julieta, primera niña diagnosticada con BPAN en Colombia
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Sophia’s iHope Story: Diagnosing a Rare De Novo Mutation
06:11
Lily's story
Elijah a boy with BPAN
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This is Vicky's story please share and let's spread the word to help find a cure for BPAN.

Esta es la historia de Vicky por favor comparte y demos difusión para ayudar a encontrar una cura para BPAN
Sydney's Song

SHARE YOUR STORY

To help spread awareness of BPAN, it is important for our BPAN community to share patient stories through a variety of methods. This includes bringing a face to the disease through photos and videos on our website, social media, brochures and other promotional materials. If you are interested in sharing your child’s photo(s), video(s), and/or story with us, please complete the form below. Any questions on photo and video usage may be directed BPAN Warriors Executive Director, Sarah Chisholm.

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