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3 weeks ago | 
hemophilianewstoday.com | Andrea Lobo |Margarida Maia |Cazandra Campos- MacDonald |Lindsey Shapiro
Prophylactic, or preventive, treatment with Alhemo (concizumab) is associated with better quality of life and a lower treatment burden for people with hemophilia A or B without inhibitors, according to patient-reported data from a Phase 3 trial. The ongoing study, called explorer8 (NCT04082429), is investigating the efficacy and safety of Alhemo, when given via once-daily subcutaneous (under-the-skin) injections, in people with hemophilia A or B without inhibitors.
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3 weeks ago | 
hemophilianewstoday.com | Jennifer Lynne |Joe MacDonald |Cazandra Campos- MacDonald
It’s that time of year again when brackets are busted, Cinderella stories happen, and basketball fans everywhere are glued to the television for the madness of March. The NCAA basketball tournament is full of buzzer-beaters, heartbreak, and jaw-dropping comebacks. And oddly enough, for many of us living with bleeding disorders, it all feels strangely familiar. This year, I filled out my bracket with optimism, placing my hopes in the Wisconsin Badgers.
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1 month ago | 
hemophilianewstoday.com | Jennifer Lynne |Jacob Harney |Cazandra Campos- MacDonald |Joe MacDonald
There have been many moments in my life when I’ve blatantly thought, “If I die bleeding, I die bleeding.” Of course, I didn’t want to think that, but I felt like I had no other choice. When doctors brush off your bleeding, when you’re told, “You’re “just anemic,” when specialists insist that “women don’t have hemophilia and they aren’t bleeders” — it wears you down. It’s exhausting and infuriating. And for countless women with bleeding disorders, it’s also terrifying.
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1 month ago | 
hemophilianewstoday.com | Lindsey Shapiro |Jennifer Lynne |Joe MacDonald |Cazandra Campos- MacDonald
The National Organization for Rare Disorders (NORD) is seeking participants for its survey-based study Living Rare, which aims to better understand the real-world lived experiences of people in the U.S. with rare diseases. Living Rare, the first large-scale study of its kind in the U.S., seeks to capture the changing unmet needs and challenges faced by rare disease patients over time, according to the nonprofit.
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1 month ago | 
hemophilianewstoday.com | Cazandra Campos- MacDonald |Patricia Inacio |Esteban Cerezo |Lindsey Shapiro
Second in a series. Read part one. A hemophilia inhibitor is like a firewall in a computer network. Clotting factor replacement therapy is supposed to enter the bloodstream and help form clots to stop bleeding, just as data should pass through a network without interruption. However, an inhibitor acts like an overly aggressive firewall, misidentifying the helpful clotting factor as a threat and blocking it from doing its job.
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2 months ago | 
hemophilianewstoday.com | Lindsey Shapiro |Cazandra Campos- MacDonald |Andrea Lobo |Katherine Poinsatte
Antibody therapy Mim8 (denecimig) was well tolerated and provided effective bleed control in children with hemophilia A regardless of inhibitor status. That’s according to interim data from the now-complete Phase 3 FRONTIER3 study (NCT05306418), which enrolled children ages 1-11. These findings were consistent with recent data from the Phase 3 FRONTIER2 trial (NCT05053139), in which Mim8 led to significant bleed reductions in adults and adolescents with hemophilia A.
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Sep 5, 2024 | 
hemophilianewstoday.com | Cazandra Campos- MacDonald |Joe MacDonald |Lindsey Shapiro |Alliah Czarielle
I live in the high desert of New Mexico, where we have each year. It’s a perfect place to hike, bike, climb, and run. The beauty of this place is undeniable. Yet despite all its splendor, I often find myself yearning for the storms. Right now, we’re in the monsoon season, which typically runs from June through September. This period brings heavy rains in the evenings, a nice break from the daytime heat of the summer sun.
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Sep 2, 2024 | 
hemophilianewstoday.com | Alliah Czarielle |Esteban Cerezo |Cazandra Campos- MacDonald
For many millennial families, the dining table has become somewhat of a relic. What was once a central feature of family life — where meals were shared, stories told, and connections made — is now increasingly overlooked. It’s a trend I’ve seen in many homes, including my own, where we opt to eat from the comfort of couches, beds, or even the floor. For a long time, my family didn’t use a dining table.
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Aug 28, 2024 | 
hemophilianewstoday.com | Cazandra Campos- MacDonald |Margarida Maia |Joe MacDonald
My son Caeleb recently started college. He’s enjoyed the beginning of school and appreciates the flexibility of his schedule, but there’s one problem: his mobility. Caeleb lives with severe hemophilia A with an inhibitor. Persistent bleeding into his right knee and ankle resulted in irreparable damage and significant joint pain. After looking at an MRI scan of Caeleb’s knee and ankle, one doctor stated that the images looked similar to that of a patient in a veterans hospital.
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Aug 26, 2024 | 
hemophilianewstoday.com | Alliah Czarielle |Esteban Cerezo |Joe MacDonald |Cazandra Campos- MacDonald
My husband, Jared, and I are navigating another significant life transition. Our daughter, Cittie, is now on her second week of kindergarten, which marks the official start of formal schooling here in the Philippines. This transition is even more pronounced because we’ve moved her from a traditional school to a Montessori school.
