Meet proactive, engaged patients who share their stories so others may benefit. Their stories highlight specific examples and tips for building effective coping and self-advocacy skills, with the goal of living well with bone marrow failure disease.

Share your success story with us. We want to know how you are using self-advocacy tools to become a more powerful patient.

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A PNH survivor for more than 25 years, Stephen King speaks about his life as a patient and an advocate in both formal and informal roles -- and offers advice for newly diagnosed PNH patients.  “I’m an engineer with a problem-solving orientation,” says the medical software...
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Linda Payne of Fayetteville, Georgia, has always been a strong self-advocate. A retired nurse practitioner, Linda is familiar with doctors and medical terms and has no trouble asking questions. If she doesn’t know what her doctor is talking about, she just says, “Assume I know...