The Story of a Pearl: Embracing Irritants in a Process of Becoming
I’ve recently taken to collecting pearls. It started as a stock-obtaining activity for the jewelry business I run with my husband, Jared, who has ... Read more
Updates
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Esperoct Approved in Canada for Treatment of Hemophilia A
Health Canada has approved Esperoct, an engineered formulation of clotting factor VIII, for the treatment of hemophilia A in people of all ages. ... Read more -
Preclinical Work by Sigilon Supports Cell Therapies as Durable Way of Treating Bleeding Disorders
Cell therapies may be a feasible way of achieving a long-term correction of bleeding disorders, preclinical data shared by Sigilon Therapeutics show. A single implant ... Read more -
How Hemophilia Care Evolution Has Changed My Family Dynamics
When my son “MacDonald the Older” took over his care, I celebrated his accomplishment. “MacDonald the Younger” would not reach independence until many years ... Read more
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From Severe to Mild: My Son Embarks on a New Adventure
Severe, moderate, and mild: These are the degrees with which a person with hemophilia ... -
Interim Results of Alta Study Support SB-525’s Potential as Severe Hemophilia A Treatment
Investigational gene therapy SB-525 can safely induce durable clotting factor VIII (FVIII) activity in ... -
We Must Believe Girls and Women with Hemophilia Who Say They Are in Pain
Over the past few years, I have had the pleasure of connecting with many ... -
Vaccination of Hemophilia Patients Varies in Germany and Should Be Reassessed to Minimize Fear, Survey Suggests
Recommendations for vaccination practices for patients with hemophilia should be reassessed in an effort ... -
World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients
It wasn’t until Gordana Loleska’s son David was 14 years old that doctors in ... -
My Son’s Trip to a Trampoline Park Is a Triumph Over Hemophilia
When I was a kid in the 1970s and ’80s, I thought children who ...
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Europe’s CHMP Recommends Approval of Hemlibra to Treat Hemophilia A
News
Europe’s Committee for Medicinal Products for Human Use (CHMP) has issued a positive opinion supporting the approval of Hemlibra (emicizumab) for routine prophylaxis of bleeding episodes in hemophilia A patients with factor VIII inhibitors. Hemlibra is a humanized monoclonal antibody that ... Read more