Ultrasound of the joints and muscles is slowly becoming a staple in many Hemophilia Treatment Centers to detect bleeding episodes and to follow joint health over a long time. But how does this work and what are the benefits? Participants will walk…
Being a good consumer is more than just access to products and care, it is also about knowing the do’s and don’ts that impact your daily life with a bleeding disorder. It’s about understanding your disease, choosing a care team, clearly…
Having a bleeding disorder comes with great responsibility to get the best care possible. This interactive session will give you information on the sometimes confusing acronyms – HTC, 340B, HRSA, etc. – which can be a roadblock to getting care. We…
Learning through the lived experiences of others is helpful in navigating the landscape of bleeding disorder care. In this workshop, participants will be given an opportunity to learn through investigating scenarios building on the previously…
Recently there has been an explosion of innovative research in the treatment of Hemophilia utilizing gene therapy technology. This workshop will help you develop a basic understanding of the complexities of gene therapy including terminology, how…
We continue to see significant research and innovation in the treatment of Hemophilia. It is becoming more important than ever to stay informed on all the advancements and innovation – what they are, how they work in the body and how…
Clinical trials are key to advancing safe and effective treatments for bleeding disorders. They are an important step in the FDA drug-approval process and provide researchers with invaluable data about a drug’s effectiveness and side effects. With…
Objective:
While a new generation of therapies for patients with Hemophilia A are available, it is unclear what patient characteristics, perceptions, and barriers are associated with the decision to switch FVIII replacement…
YOU are your most important advocate in the health care system. If you have a child, you are also their most important advocate. In order to be a strong advocate for yourself and/or your child, it is important for you to learn how to make your…
Mantenerse activo es imprescindible para las personas con trastornos hemorrágicos, ya que ayuda a conservar y recuperar la salud de las articulaciones, a prevenir problemas de movilidad y a mejorar la calidad de vida. Únase a esta presentación para…