Living with a bleeding disorder affects more than just the body. It impacts emotional and psychological well-being, as well. Managing a chronic condition like hemophilia or von Willebrand disease often comes with daily stress, uncertainty, and limitations that can...
Today on Beyond the Bleeds, we’re joined by Kate Bazinsky, chair of the Bleeding Disorder, Substance Use and Mental Health Access Coalition (BD SUMHAC), and Joe Hoelscher, a behavioral health specialist at the Hemophilia Outreach Center in Green Bay. Together, we shine a light on the painful and often unseen barriers faced by people with bleeding disorders when they seek inpatient mental health and substance use treatment. We discuss the origins of BD SUMHAC, the deep connections between chronic conditions, mental health, and substance use, and the urgent advocacy work happening to dismantle discrimination and secure equal access to care for the bleeding disorders community.
At Hemophilia Outreach Center, we're committed to more than just medicine — we're committed to people. Gene therapy is a groundbreaking treatment, but what makes it truly meaningful are the people behind it — the patients who face each day with courage, the care teams...
Today on Beyond the Bleeds, John and Heather welcome Sumedha Ghate, a genetic counselor at HOC in Green Bay, Wisconsin. Sumedha delves into the intricate world of genetic counseling, discussing the nuances of determining hereditary patterns in hemophilia and other bleeding disorders. The conversation helps demystify genetic testing and its role in diagnosing and managing bleeding disorders, aiming to empower individuals with knowledge about their health and family history.
At Hemophilia Outreach Center, we're committed to more than just medicine — we're committed to people. Gene therapy is a groundbreaking treatment, but what makes it truly meaningful are the people behind it — the patients who face each day with courage, the care teams...
At Hemophilia Outreach Center, we're committed to more than just medicine — we're committed to people. Gene therapy is a groundbreaking treatment, but what makes it truly meaningful are the people behind it — the patients who face each day with courage, the care teams...
Today on Beyond the Bleeds, Heather and John welcome Karin Koppen and Kailee Frederick from the Great Lakes Hemophilia Foundation to discuss their incredible work and programs serving the bleeding disorders community. Karin and Kailee share insights into the distinctive roles of local chapters in providing education, support, and advocacy while working closely with hemophilia treatment centers to ensure comprehensive patient care.
At Hemophilia Outreach Center, we're committed to more than just medicine — we're committed to people. Gene therapy is a groundbreaking treatment, but what makes it truly meaningful are the people behind it — the patients who face each day with courage, the care teams...
As we approach World Hemophilia Day on April 17th, 2025, the global bleeding disorders community is coming together to raise awareness and advocate for change. This year’s theme, “Access for all: Women and girls bleed too”, shines a much-needed spotlight on a critical...
Today, on Beyond the Bleeds, we share the experiences of Erin Wegner, a mother who navigates life with two sons diagnosed with hemophilia. Alongside Angie Farrar, lead nurse coordinator at the Wausau Hemophilia Outreach Center, Erin discusses the challenges and learning curves of her unexpected journey into the world of bleeding disorders, emphasizing the importance of specialized care and community support.
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