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I’m finding my rhythm again thanks to a positive turn in my PNH journey

Note: This column describes the author’s experiences with Fabhalta (iptacopan). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. There’s something powerful about being able to say, “This is getting better.” After the uncertainty that came with my recent medication change for…

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News

First patients dosed in Phase 2 trials of Argo’s complement therapy BW-40202

The first patient has been dosed in Argo Biopharmaceutical’s Phase 2 clinical trial of BW-40202 for paroxysmal nocturnal hemoglobinuria (PNH), one of two new Phase 2 studies testing the investigational therapy. The Phase 2 studies follow a Phase 1 trial (NCT06917482) initiated last year to assess BW-40202’s…

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News

Iron in kidneys leads doctors to diagnose man’s PNH: Case report

Doctors in China diagnosed a man with paroxysmal nocturnal hemoglobinuria (PNH) after a biopsy and specialized MRI, performed to assess kidney problems, yielded clues about ongoing red blood cell breakdown. The tests identified iron buildup in the man’s kidneys (renal hemosiderosis). The findings raised suspicion of ongoing red blood…

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Columns

I’m navigating a new chapter with PNH, one between fear and hope

There’s a certain kind of exhaustion that comes with living with paroxysmal nocturnal hemoglobinuria (PNH) that isn’t just physical. It’s emotional, mental, and sometimes even spiritual. Recently, I found myself back in that space after experiencing a flare-up with symptoms that reminded me just how unpredictable this disease…

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Featured ColumnImproving quality of life is key to living fully with PNH

Columnist Shaquilla Gordon says it’s important to ask ourselves how we can live fully while managing this rare disease.

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Perspectives

  1. Main banner for Shaquilla Gordon's column Discussion
    Columns

    I’m finding my rhythm again thanks to a positive turn in my PNH journey

  2. Main banner for Shaquilla Gordon's column Discussion
    Columns

    I’m navigating a new chapter with PNH, one between fear and hope

  3. Main banner for Shaquilla Gordon's column Discussion
    Columns

    Rethinking what control looks like after a PNH diagnosis

  4. Main banner for Shaquilla Gordon's column Discussion
    Columns

    In the rare disease community, we find strength in each other

  5. Main banner for Shaquilla Gordon's column Discussion
    Columns

    Improving quality of life is key to living fully with PNH

  6. Main banner for Shaquilla Gordon's column Discussion
    Columns

    Progress in research and treatments is a reason for holding on to hope

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