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Featured Articles
September 9, 2025 by Shaquilla Gordon

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

Living with paroxysmal nocturnal hemoglobinuria (PNH) has taught me many things, but one of the hardest lessons has been learning how to stay positive during a flare-up. When symptoms hit — in the form of crushing fatigue, dark urine, headaches, or an overwhelming feeling of weakness —…

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September 8, 2025 by Marisa Wexler MS

High satisfaction reported with Fabhalta in PNH patient interviews

Most people with paroxysmal nocturnal hemoglobinuria (PNH) treated with Fabhalta (iptacopan) in clinical trials reported high satisfaction and a meaningful easing of symptoms with the oral therapy, and generally preferred it over other older treatments. In fact, all patients previously treated with the PNH therapies Soliris (eculizumab)…

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August 25, 2025 by Steve Bryson PhD

Novartis, Atropos to use AI to find undiagnosed PNH patients

Atropos Health will partner with Novartis to develop artificial intelligence (AI) models to help identify people with rare diseases, such as paroxysmal nocturnal hemoglobinuria (PNH), who haven’t yet been diagnosed. Using AI algorithms trained on real-world data, the collaboration seeks to reduce the time from the onset…

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August 19, 2025 by Shaquilla Gordon

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

To the newly diagnosed, First, let me say that I wish we were meeting under different circumstances. You’ve just been told you have paroxysmal nocturnal hemoglobinuria (PNH), and I know how heavy those words feel. This is a club you never signed up for, but here you are —…

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Featured ColumnWhat I look for in a partner as someone living with PNH

Columnist Brandi Lewis shares what she’s looking for in a romantic partner as someone managing two rare blood disorders.

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Click the link below to find all the latest news related to PNH.

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Perspectives

  1. Main banner for Shaquilla Gordon's column
    September 9, 2025 by Shaquilla Gordon

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

  2. 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

  3. Main banner for Shaquilla Gordon's column
    August 5, 2025 by Shaquilla Gordon

    I’m wiser today about processing the emotional roller coaster of PNH

  4. Main banner for Shaquilla Gordon's column
    July 29, 2025 by Shaquilla Gordon

    Helping my partner better understand PNH brought us closer

  5. An illustration of a woman riding a roller coaster winding through a forest, as the banner image for
    July 25, 2025 by Brandi Lewis

    I’m bidding farewell to my column, but will continue to share my story

  6. Main banner for Shaquilla Gordon's column
    July 22, 2025 by Shaquilla Gordon

    Back to school with PNH: Pursuing a goal I’d put on hold

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