Living with a rare blood disorder can feel overwhelming, but no one should face it alone. The Rare Blood Diseases Hub is here for patients, families, and caregivers, offering clear, reliable information when it’s needed most. From easy-to-understand health resources to guidance shaped by medical experts, this Hub helps you make sense of complex treatment options. Our goal is simple: to empower you to feel confident, ask the right questions, and work closely with your care team to achieve the best possible health outcomes.
This 10-part webisode series will provide a review of non-factor prophylaxis therapies for hemophilia A, the roles of gene therapies as well as available agents with/without inhibitors, comparisons of safety profiles and monitoring requirements, the alignment of treatment options with …
This chart helps you decide which hemophilia treatment option is right for you by outlining details of prophylaxis options, including treatment type, who may benefit, how it’s given and how often, monitoring needs, and lifestyle benefits/considerations.
This resource explains how receiving care at a recognized hemophilia treatment center (HTC) can significantly improve your health, safety, and quality of life. It also helps you understand the benefits of comprehensive, expert care—including fewer hospital visits, access to advanced treatments, and better self-management—while guiding you on how to find and connect with an HTC near you.
This guide aims to answer the most commonly asked questions about personalizing hemophilia treatment, with options such as factor replacement, non-factor therapies, and gene therapy tailored to your unique needs and lifestyle. By working closely with your care team and staying informed, you can find a treatment plan that offers the best protection and fits comfortably into your daily life.
This guide provides you with a tool, developed by the World Federation of Hemophilia, that can help you apply shared decision-making while determining the next steps of your treatment journey.