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Featured Articles
June 17, 2025 by Shaquilla Gordon

Living with invisible illness builds strength that others can’t see

There’s a quiet kind of strength that doesn’t get applause. It’s not loud or dramatic. It’s the strength it takes to keep going when your body feels like it’s quitting on you. The kind that gets up anyway, that smiles through fatigue, that finds peace in small moments others might…

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June 16, 2025 by Lindsey Shapiro, PhD

Roche’s PiaSky treatment OK’d for adults, teens with PNH in Canada

Health Canada has approved Roche’s PiaSky (crovalimab) for treating paroxysmal nocturnal hemoglobinuria (PNH) in adults and adolescents, ages 13 and older, who weigh at least 40 kg (88 pounds). The treatment is the first one approved in Canada that’s administered via monthly injections under the skin, or subcutaneously,…

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June 10, 2025 by Shaquilla Gordon

The power of shared decision-making in patient care

Paroxysmal nocturnal hemoglobinuria (PNH) is more than just a tongue twister; it’s a rare, chronic blood disorder that alters every aspect of life. When I was diagnosed with it in 2017, I quickly realized I wouldn’t just be on a physical journey, but also an emotional and informational…

The words
June 9, 2025 by Steve Bryson PhD

Fabhalta boosts hemoglobin in PNH, eliminates need for transfusions

One year of treatment with Fabhalta (iptacopan) boosts hemoglobin levels, eliminates the need for blood transfusions, and eases fatigue in most adults with paroxysmal nocturnal hemoglobinuria (PNH). That’s according to final data from two global Phase 3 clinical trials: APPLY-PNH (NCT04558918) and APPOINT-PNH (NCT04820530), which evaluated…

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Featured ColumnHow I support other PNH and aplastic anemia patients

Columnist Brandi Lewis explains how sharing her story and providing resources can support other people with 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
    June 17, 2025 by Shaquilla Gordon

    Living with invisible illness builds strength that others can’t see

  2. Main banner for Shaquilla Gordon's column
    June 10, 2025 by Shaquilla Gordon

    The power of shared decision-making in patient care

  3. An illustration of a woman riding a roller coaster winding through a forest, as the banner image for
    June 6, 2025 by Brandi Lewis

    A letter to those new to a PNH diagnosis, from someone who gets it

  4. An illustration of a woman riding a roller coaster winding through a forest, as the banner image for
    May 23, 2025 by Brandi Lewis

    5 things I wish I knew after my PNH diagnosis

  5. Main banner for Shaquilla Gordon's column
    May 20, 2025 by Shaquilla Gordon

    Feeding my fight: How I eat to live well with PNH

  6. An illustration of a woman riding a roller coaster winding through a forest, as the banner image for
    May 16, 2025 by Brandi Lewis

    How I support other PNH and aplastic anemia patients

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