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Spend your Tuesday evenings with NHF's Education for Empowerment team. Over the course of the next four weeks, we will be presenting three of our new educational series, covering a variety of topics. Each series will contain four workshops, presented to you by our very best speakers. So grab some snacks, get comfortable, and join us virtually on Tuesday's at 7pm Eastern!
This first series is titled Hemophilia Treatment: Now and the Future, and will focus on gene and innovative therapies.
Gene Therapy Basics for Hemophilia: What You Need to Know
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 gene therapy works, and identifying the potential, limitations, risks and unknowns associated with gene therapy. We also provide a brief introduction to other novel therapies and an overview of what treatments are currently approved. Gaining a high level understanding of gene therapy will enable community members to have robust conversations with their providers and to ultimately make the best decision on treatment.
Date: 10/5
Time: 7:00 PM
The Basics of Innovative Therapies: What You Need to Know
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 safe they are. Understanding all the options including currently approved treatments, the pros and cons and the promise and limitations of each type of therapy will enable community members to have informative conversations with their providers and to ultimately make the best decision on treatment. This presentation is designed to provide a basic overview of current and future treatment options for hemophilia, making these complex concepts more understandable.
Date: 10/12
Time: 7:00 PM
Navigating Clinical Trials
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 the pace of innovation in the bleeding disorders community, it is important for consumers to understand the Clinical Trials process and what their role is should they choose to participate. Some of the topics covered include an overview of the phases of the clinical trials process, informed consent and consumer responsibilities of participation in trials.
Date: 10/19
Time: 7:00 PM
Communicating with Providers
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 concerns heard and understood. By improving communication and advocacy skills, participants will learn to speak more effectively and secure appropriate treatment.
Date: 10/26
Time: 7:00 PM
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