Conference for the rarest of bleeding disorders brings a sense of community
The CHES Foundation's One Drop is a powerful space for gathering and learning
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Last week in Tampa, Florida, I attended the CHES Foundation’s One Drop consortium, the largest national conference dedicated exclusively to people living with ultra-rare bleeding disorders.
The program focuses on conditions that often lack the resources, research attention, and community networks that are available to those with more common bleeding disorders. If you’re part of the bleeding disorders community, you know how much attention rightfully goes to hemophilia A, hemophilia B, and von Willebrand disease. But beyond those conditions are dozens of other disorders that most people, including many medical professionals, rarely encounter. These include deficiencies in factors I, II, V, VII, X, XI, XII, and platelet disorders like Glanzmann thrombasthenia and Bernard-Soulier syndrome.
The event provides a powerful sense of community, with many attendees meeting others with their rare diagnosis for the first time. The program covered a broad range of important clinical topics, including rare factor and platelet disorders, OB-GYN considerations, oral health, mental health resources, and insurance trends.
At CHES events, Kathy Byrne and Brianna O’Neil, both registered nurses, often lead self-infusion practice sessions. I don’t infuse regularly, so these sessions are important to me, and Byrne particularly has been a godsend. As I’ve shared in previous columns, I’m notoriously difficult to stick. At past events, she’s taken the time to examine my veins and offer helpful suggestions, and this year was no exception. I told her about the challenges I’d been having recently, and she patiently talked me through them.
At last year’s One Drop conference, genetic testing was offered to participants as part of the American Thrombosis and Hemostasis Network (ATHN) 10 program. The importance of genetic testing for accurate diagnosis and treatment remains critical for the ultra-rare bleeding disorder community. Tami Singleton, MD, led a session this year that emphasized the importance of collecting data to identify the genes responsible for these disorders.
Finding connection in rare disorders
As valuable as the sessions were, what stood out to me most were the conversations happening in the hallways between sessions. Parents compared notes about unexplained bleeding in their children. Adults described years of misdiagnosis before finally receiving answers. Families realized they are not the only ones navigating a condition that even specialists may rarely see. The conference serves as a critical space for people to gather, learn, and be heard, ultimately helping to shape and advance care in the ultra-rare bleeding disorders community.
For a few days, people who often feel invisible in the healthcare system found themselves surrounded by others who understood their reality. Clinicians listened to lived experiences that may reshape how they approach care.
Living with hemophilia B, von Willebrand disease, and a platelet disorder has shown me that bleeding disorders are rarely simple or easy to explain. Watching others with ultra-rare conditions find connection and understanding at One Drop reminded me how powerful it is when no one has to navigate these challenges alone.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always consult your physician or another qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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