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.
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 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 clinician resource explains the importance of a multidisciplinary team (MDT) approach in diagnosing and managing hereditary transthyretin amyloidosis (ATTRv), a progressive, multisystem disease with varied symptoms. It outlines the key roles of diverse clinical specialists—from cardiologists and neurologists to genetic counselors and palliative care providers—in ensuring timely diagnosis, coordinated care, and optimal treatment outcomes.
This downloadable resource is a template created by Epilepsy Alliance America to help in the creation of an acute seizure action plan for patients with Lennox-Gastaut syndrome.