{"podcast":{"title":"Beyond the Bleeds","slug":"beyond-the-bleeds-7074228","podcast_index_feed_id":7074228,"rss_url":"https://hemophiliaoutreach.org/feed/podcast/","website_url":"https://hemophiliaoutreach.org/","image_url":"https://hemophiliaoutreach.org/wp-content/uploads/2025/04/Album-Art.jpg","author":"Hemophilia Outreach Center","episode_count":50,"summary":"Beyond the Bleeds is your go-to podcast for navigating life with bleeding disorders like hemophilia, von Willebrand disease, and more. Each episode brings expert insights, inspiring personal stories, and practical advice for managing these conditions. Whether you’re living with a bleeding disorder or supporting someone who is, this podcast offers support, education, and a sense of community. Join us as we explore the challenges, triumphs, and innovations in care. For more resources, visit hemophiliaoutreach.org.","last_synced_at":"2026-07-20T10:20:06.864084+00:00","page_url":"https://stenobird.com/podcast/beyond-the-bleeds-7074228"},"episode":{"title":"Growing Community and Hope at the National Bleeding Disorder Foundation Conference with Stephanie Paap","slug":"growing-community-and-hope-at-the-national-bleeding-disorder-foundation-conference-with-stephanie-paap","published_at":"2025-11-24T05:00:00+00:00","page_url":"https://stenobird.com/podcast/beyond-the-bleeds-7074228/growing-community-and-hope-at-the-national-bleeding-disorder-foundation-conference-with-stephanie-paap","show_page_url":"https://stenobird.com/podcast/beyond-the-bleeds-7074228","url":"https://hemophiliaoutreach.org/growing-community-and-hope-at-the-national-bleeding-disorder-foundation-conference-with-stephanie-paap/","audio_url":"https://media.blubrry.com/3770961/content.blubrry.com/3770961/033_Growing_Community_and_Hope_at_the_National_Bleeding_Disorder_Foundation_Conference_with_Stephanie_Paap_Final.mp3","summary":"Today on Beyond the Bleeds, we sit down with Stephanie Paap to delve into the lived experience of attending the National Bleeding Disorder Foundation’s annual conference. Together, we journey through the unique considerations of traveling with a bleeding disorder, and the powerful impact of connection, education, and advocacy at a national gathering. We talk honestly about preparing for travel, managing care for a family with Von Willebrand’s disease, and how conferences like NBDF foster hope and community for patients and caregivers alike. Stephanie Paap is a Green Bay native, long-time member of the Hemophilia Outreach Center, and an active parent-advocate for her two daughters, who are also diagnosed with Von Willebrand’s disease. With deep generational ties to the bleeding disorder community, Stephanie’s perspective is shaped by both personal experience and her commitment to supporting the next generation. Her story highlights the importance of preparedness, advocacy, and the profound reassurance found in connecting with others who truly understand the journey. “I really encourage you to lean on your community, make use of your resources, and always keep mental health at the forefront of your journey.” ~Stephanie Paap Today on Beyond the Bleeds: Attending a national conference can provide a powerful sense of community and support, especially for rare disorders like Von Willebrand’s. Preparation and advocacy are essential when traveling with bleeding disorder medications, always carry a travel letter and keep supplies close. Conference roundtables, particularly disorder-specific ones, offer invaluable peer learning, shared understanding, and mental health support. Kids benefit from attending these conferences too, making connections with others their age fosters ope…","meta_description":"Today on Beyond the Bleeds, we sit down with Stephanie Paap to delve into the lived experience of attending the National Bleeding Disorder Foundation’s an…","key_points":[],"chapters":[],"topics":[],"duration_seconds":1507,"processing_state":"not_requested","actions":[{"name":"request_transcript","method":"POST","url":"https://stenobird.com/v1/public/podcasts/beyond-the-bleeds-7074228/episodes/growing-community-and-hope-at-the-national-bleeding-disorder-foundation-conference-with-stephanie-paap/transcription-requests","description":"Idempotently request low-priority transcript generation for this episode."},{"name":"read_markdown","method":"GET","url":"https://stenobird.com/podcast/beyond-the-bleeds-7074228/growing-community-and-hope-at-the-national-bleeding-disorder-foundation-conference-with-stephanie-paap.md","description":"Read the agent-friendly Markdown representation of this episode resource."}]}}