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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.