When you have an ultra-rare bleeding disorder, it can be difficult to find the kind of specialized support you need. You need to talk to experts who understand the nuances of your disorder, and a community that knows what you’re going through. Living Rare: Rare Bleeding Disorders Education Series is the first of a four-part series that will enable you to learn more about managing the physical and emotional aspects of living with a rare bleeding disorder. The event is free and open to everyone from around the world.
Saturday, March 27, 2021 starting at
3:00PM EST / 2:00PM CST / 1:00PM MST / 12:00PM PST / 10:00AM HST
Living Rare: Rare Bleeding Disorders Education Series Agenda
Living the Rare Experience
As the opening plenary session for Living Rare, this session will discuss the lived experiences of rare bleeding disorders community members. Panelists will have a diversity of backgrounds, identities, and diagnoses, and will employ a health equity lens to their stories.
Current Treatments for Rare Bleeding Disorders
This session will discuss current treatment options for rare factor deficiencies and platelet dysfunctions. It will also provide practical tips about what information will foster an effective discussion with your hematology care provider about your best treatment plan.
Finding Your Own Rare Path
This session will enable you to establish community connections and network with other people in the rare bleeding disorders community through moderated discussions and will link to the previous sessions. Participants will have an opportunity to share their lived experiences and learn from others who have walked on a similar path.
Industry Roundtables
Chat with our industry sponsors and learn about new products and programs.
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