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Featured Articles
November 4, 2025 by Shaquilla Gordon

Living with the fear of aplastic anemia while managing PNH

When you live with paroxysmal nocturnal hemoglobinuria (PNH), you learn early on that no two days are ever the same. Some days, I wake up with energy and hope. Other days, I’m reminded that this rare disease is unpredictable — it can shift and change without warning. One of…

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November 3, 2025 by Margarida Maia, PhD

Trial of PNH therapy vemircopan halted after frequent hemolysis

Vemircopan, a therapy that Alexion, AstraZeneca Rare Disease was developing for paroxysmal nocturnal hemoglobinuria (PNH), increased hemoglobin levels in a Phase 2 study, but frequent episodes of hemolysis — the destruction of red blood cells — were noted.  In a…

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October 27, 2025 by Patricia Inacio PhD

PNH symptoms suddenly return for 50% of patients in treatment

Despite therapy with complement inhibitors, half of individuals with paroxysmal nocturnal hemoglobinuria (PNH) develop breakthrough hemolysis, or BTH — when PNH symptoms suddenly return despite ongoing treatment — according to a real-world study. The incidence and severity of BTH were found to be particularly high in patients treated with…

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October 21, 2025 by Shaquilla Gordon

Facing the ‘what-ifs’ of PNH complications

Living with paroxysmal nocturnal hemoglobinuria (PNH) isn’t just about managing what’s happening today; it’s also about facing what could happen tomorrow. As much as I try to live in the moment, I’d be lying if I said the potential complications of PNH don’t cross my mind. The truth is,…

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Featured ColumnFinding the right doctor to partner with in my PNH care

For columnist Shaquilla Gordon, choosing a doctor is about more than finding a medical expert; they must also be a partner on her journey.

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Living Fully With PNH: One Patient’s Journey

Perspectives

  1. Main banner for Shaquilla Gordon's column
    November 4, 2025 by Shaquilla Gordon

    Living with the fear of aplastic anemia while managing PNH

  2. Main banner for Shaquilla Gordon's column
    October 21, 2025 by Shaquilla Gordon

    Facing the ‘what-ifs’ of PNH complications

  3. Main banner for Shaquilla Gordon's column
    October 7, 2025 by Shaquilla Gordon

    Finding the right doctor to partner with in my PNH care

  4. Main banner for Shaquilla Gordon's column
    September 30, 2025 by Shaquilla Gordon

    We shouldn’t have to battle with insurance to access PNH care

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    September 9, 2025 by Shaquilla Gordon

    Staying positive during a PNH flare isn’t easy, but it’s worth it

  6. Main banner for Shaquilla Gordon's column
    August 19, 2025 by Shaquilla Gordon

    To the newly diagnosed: Welcome to the club no one asks to join

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This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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