Hereditary Hemorrhagic Telangiectasia (HHT), also known as Osler-Weber-Rendu syndrome, is a genetic disorder that affects blood vessels. People with HHT often develop abnormal blood vessels called telangiectasias and arteriovenous malformations (AVMs) that can cause...
Welcome to Beyond the Bleeds! In this very first episode, John and I are excited to introduce ourselves and lay the foundation for a community centered around life with bleeding disorders. Whether you're managing hemophilia, von Willebrand disease, or any rare...
Glanzmann Thrombasthenia (GT) is a rare genetic bleeding disorder characterized by the inability of platelets to properly form blood clots, leading to prolonged bleeding episodes. Fortunately, recent advancements offer new hope for individuals living with GT....
Choosing the right hemophilia center is crucial for effective management and treatment of bleeding disorders. A specialized center provides comprehensive care tailored to meet the unique needs of individuals with hemophilia. What is a Hemophilia Center? A hemophilia...
PETOSKEY, MI- Petoskey resident with Hemophilia B is the first patient in the state to receive gene therapy, HEMGENIX, since FDA approval. “With this treatment and the promise of actually feeling even just a little better my hopes and dreams are already starting to...
Administered in Green BayHEMGENIX is revolutionizing treatment with its groundbreaking one-time infusion that offers elevated and sustained factor IX levels for years. Approved by the FDA in 2022, HEMGENIX has been the focus of extensive research for many years,...
Hemophilia is a complex bleeding disorder requiring specialized management to maintain a high quality of life. Hemophilia treatment centers (HTCs) offer a multidisciplinary approach to care, designed to address the diverse needs...
Understanding Von Willebrand Disease Von Willebrand Disease (vWD) is one of the most common hereditary bleeding disorders, affecting both men and women equally. It occurs due to a deficiency or dysfunction of von Willebrand factor (vWF), a protein crucial for blood...
GREEN BAY, WI- Green Bay resident with Hemophilia A is the first patient in the state to receive gene therapy, Roctavian, since FDA approval. “It is just exciting to know how far medicine has come. I never thought in my lifetime a treatment like this would become...
For individuals and families navigating the complexities of hemophilia and other bleeding disorder diagnoses, finding a treatment center that offers comprehensive, personalized care is paramount. This in-depth guide aims to illuminate the path to finding the right...
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