BloodStream

On the next episode of BloodStream, we're talking about community, connection, and what it means to find your people. For Blood Brother Michael Eck, community wasn't always a big part of his life with a bleeding disorder. For years, he barely engaged with it. Now, as he's gotten older, that relationship has changed, and Michael joins us to talk about what brought him back and why the connection looks different today. We're also joined by Robyn Kebede, HFA's Education Manager, to talk about what's happening across the organization, where their programming is headed, and what they're hearing from the community right now. Two guests, two perspectives, and one big reminder: there's no right time, right way, or one-size-fits-all approach to finding your community. Find your favorite listening spot, because this is one you'll want to hang out with us for! Show Notes: Hemophilia Federation of America Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok

On the next episode of BloodStream, we're asking two big questions: who gets missed, and what happens when the story you've been living starts to change? Ranvitha Chirumamilla joins us to explore how her own experience with iron-deficiency anemia sparked an interest in women with bleeding disorders and a bigger question: when factor levels don't raise enough concern, who might be getting missed? And our blood brother Reid Morgan is back for I'm Fine! A handful of years after sharing his story with us publicly for the first time, Reid reflects on what "I'm fine" has meant to him and what happens when an illness that has shaped so much of your identity starts to feel like less of the story. So grab your headphones and join Ranvitha and Reid for two thoughtful, very different conversations about being seen, being heard, and figuring out who we are along the way. Show Notes: Novo flags FDA hemophilia review extension tied to manufacturing site corrections Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. I'm Fine is presented by @SanofiUS Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok

What does it take to make history? And what does it mean to make sure a community's story gets heard? On the latest episode of BloodStream, we're diving into both. Tim Stowers, fellow blood brother and history-making Channel swimmer, joins our hosts with his sister Vanessa and nephew Elias to share the story behind his incredible open-water swim. Then, in honor of ITP Awareness Month, Caroline Kruse, CEO & President of the Platelet Disorders Support Association, joins us to talk about ITP, the platelet disorders community, and the stories that deserve a bigger spotlight. Show Notes: Platelet Disorders Support Association Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok

Would you participate in a clinical trial? On the latest episode of BloodStream, Patrick and Amy explore the personal decisions behind research participation. Kevin Finkle joins the I'm Fine segment to share his experience participating in multiple clinical studies and what has shaped his decision to keep getting involved. Later, Benny Sorensen, MD, PhD, CEO of Hemab Therapeutics, offers a look at the role patients play in moving research forward and why asking questions matters. Whether you've participated in research, are considering a study, or have simply wondered, "Are clinical trials for me?" this episode is for you. Show Notes: The Bleeding Edge Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. I'm Fine is presented by @SanofiUS Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok

What does it take to create a more connected rare disease community? On the latest episode of BloodStream, Gorana Dasic of Kedrion Biopharma is featured on Movers & Shakers of Rare, and Archit Gupta from Zebra for Care joins Patrick James Lynch and Amy Board to explore the ideas, innovations, and collaborations helping create a more connected experience for patients and families. Archit Gupta from Zebra for Care joins the conversation to discuss a new model for supporting patients and building resources that meet people where they are in their healthcare journey. From advocacy and innovation to new approaches in care, this episode highlights the people working to make the rare disease experience more connected, informed, and patient-focused. Show Notes: Zebra for Care Movers & Shakers in Rare Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok

Living with a bleeding disorder can feel isolating, but finding people who truly understand your experience can change everything. On the latest episode of BloodStream, Patrick James Lynch and Amy Board sit down with Jonathan James, founder and CEO of Hope Charities, to explore how connection, community, and shared experiences can make a lasting difference for patients and families. Jonathan shares the story behind Hope Charities, the relationships that inspired its mission, and why creating spaces where people feel seen and supported matters just as much as the programs themselves. Whether you're living with a bleeding disorder, caring for someone who is, or simply looking for a reminder of the power of community, this conversation is one you won't want to miss. Show Notes: Hope for Charities Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok

Chris Bombardier is back on the podcast! On the latest episode of BloodStream, Chris returns for another Zebra for Care conversation, sharing why awareness, advocacy, and making sure people living with bleeding disorders feel seen and supported matters now more than ever. Patrick James Lynch and Amy Board also reflect on the conversations and connections shaping this year's Bleeding Disorders Conference (BDC), sharing what they hope to learn and bring back to patients and families. In the I'm Fine segment, Carrera Christman opens up about the pressure of always being the strong one and how she learned that asking for help is a strength. As an advocate, community leader, and member of the National Youth Leadership Institute, Carrera explores resilience, vulnerability, and the power of saying, "I'm not fine." From community connection to honest conversations about mental health, this episode is a reminder that no one has to navigate their journey alone. Show Notes: Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. I'm Fine is presented by @SanofiUS Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok

Please see https://www.pfi.sr/HYMPAVZI_PI for Full PI #HYMPAVZISponsored Mosi Williams, PsyD, lives with hemophilia and has served in the Bleeding Disorders Community for the past 30 years. He is currently a Licensed Clinical Social Worker for the UCSF Adult Hemophilia Treatment Center. Mosi joins Patrick to explore the evolving treatment landscape and the anxiety that critical moments that shape life with hemophilia—like going back to school, starting a new job, or planning a wedding—can bring, and how they can prompt deeper consideration of a treatment change. We'll provide listeners with the latest on HYMPAVZI (marstacimab-hncq) and highlight the value of shared decision-making. HYMPAVZI may cause serious side effects, including blood clots (thromboembolic events). HYMPAVZI may increase the risk for your blood to clot in blood vessels in your arm, leg, lung, or head, which can be life-threatening. To learn more about this risk and additional safety information visit www.HYMPAVZI.com. This post is directed to a U.S. audience and may not be suitable outside of the U.S. This video is intended to be viewed as it was originally produced in partnership with Pfizer. Remember, this content is for educational purposes only and does not replace discussions with a healthcare provider. PP-HYM-USA-1290 Show Notes: For safety information visit: https://labeling.pfizer.com/ShowLabeling.aspx?id=20916&Section=PPI For information on how to navigate your treatment journey, visit the Shared Decision- making Guide: https://webfiles.pfizer.com/HYM-Shared-Decision Listen and Subscribe where you get your podcasts! #Hemophilia IMPORTANT SAFETY INFORMATION Important: Before you start using HYMPAVZI, it is very important to talk to your healthcare provider about using factor VIII and factor IX products or "bypassing agents" (products that help blood clot but work in a different way than HYMPAVZI). Your healthcare provider may prescribe factor VIII or factor IX medicines or bypassing agents to treat episodes of breakthrough bleeding during your treatment with HYMPAVZI. Carefully follow your healthcare provider's instructions regarding when to use these medicines and the prescribed dose during your treatment with HYMPAVZI. Do not use additional doses of HYMPAVZI to treat breakthrough bleeds. Before using HYMPAVZI, tell your healthcare provider about all of your medical conditions, including if you: have a planned surgery. Your healthcare provider may stop treatment with HYMPAVZI before your surgery. Talk to your healthcare provider about when to stop using HYMPAVZI and when to start it again if you have a planned surgery. have a severe short-term (acute) illness such as an infection or injury. have been told that you have a risk for blood clots. are pregnant or plan to become pregnant. HYMPAVZI may harm your unborn baby. Females who are able to become pregnant: Your healthcare provider will do a pregnancy test before you start your treatment with HYMPAVZI. Use effective birth control (contraception) during treatment with HYMPAVZI and for at least 2 months after the last dose of HYMPAVZI. Tell your healthcare provider right away if you become pregnant or think that you may be pregnant during treatment with HYMPAVZI. are breastfeeding or plan to breastfeed. It is not known if HYMPAVZI passes into your breast milk. Tell your healthcare provider about all the medicines you take, including prescription medicines, over-the-counter medicines, vitamins, and herbal supplements. If you inject too much HYMPAVZI, call your healthcare provider or the Poison Help Line at 1-800-222-1222 or go to the nearest hospital emergency room right away. What are the possible side effects of HYMPAVZI? HYMPAVZI may cause serious side effects, including: blood clots (thromboembolic events). HYMPAVZI may increase the risk for your blood to clot in blood vessels in your arm, leg, lung, or head, which can be life-threatening. Blood clots have happened in people using HYMPAVZI. You may have an increased risk of blood clots if you have certain risk factors. Stop using HYMPAVZI and get medical help right away if you develop any of these signs or symptoms of blood clots: swelling or pain in your arms or legs redness or discoloration in your arms or legs shortness of breath pain in chest or upper back fast heart rate cough up blood feeling faint headache numbness in your face eye pain or swelling trouble seeing allergic reactions. HYMPAVZI may cause allergic reactions, including rash and itching. Stop using HYMPAVZI and get medical help right away if you develop any of the following symptoms of a severe allergic reaction: swelling of your face, lips, mouth, or tongue trouble breathing wheezing dizziness or fainting fast heartbeat or pounding in your chest sweating The most common side effects of HYMPAVZI include: swelling, hardening, redness, bruising, bleeding, and pain at injection site headache fever joint pain diarrhea itching rash These are not all the possible side effects of HYMPAVZI. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088. What is HYMPAVZI? HYMPAVZI is a prescription medicine used regularly to prevent or reduce the frequency of bleeding episodes in adults and children 6 years of age and older with: hemophilia A with or without factor VIII inhibitors, or hemophilia B with or without factor IX inhibitors. It is not known if HYMPAVZI is safe and effective in people receiving ongoing Immune Tolerance Induction (ITI). It is not known if HYMPAVZI is safe and effective in children younger than 6 years of age.

Could new research change the way hemophilia B carriers are cared for during pregnancy? On this episode of BloodStream, Patrick and Amy explore emerging research that challenges long-held assumptions about factor IX levels during pregnancy and what it could mean for patients and providers. Nathan Mermilliod shares his experience living with hemophilia B, and Dr. Steven Fein discusses the evolving landscape of telemedicine in partnership with Zebra for Care. From new discoveries to lived experiences, this episode highlights the stories and science moving the bleeding disorders community forward. Show Notes: Contrary to current guidance, antenatal factor IX levels increase in female carriers of hemophilia B Hope for Hemophilia Zebra Care Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok

Please see https://www.pfi.sr/HYMPAVZI_PI for Full PI On this episode of BloodStream, Patrick facilitates a conversation between Peter, who is living with hemophilia A, and Dr. Tammuella Chrisentery-Singleton, a board-certified hematologist and Chief Science Officer (CSO) for The American Thrombosis and Hemostasis Network (ATHN), to explore the shared decision-making process and why it matters. We'll provide listeners with the latest on HYMPAVZI (marstacimab-hncq) and highlight the value of shared decision-making. HYMPAVZI may cause serious side effects, including blood clots (thromboembolic events). HYMPAVZI may increase the risk for your blood to clot in blood vessels in your arm, leg, lung, or head, which can be life-threatening. To learn more about this risk and additional safety information visit HYMPAVZI.com. This post is directed to a U.S. audience and may not be suitable outside of the U.S. This video is intended to be viewed as it was originally produced in partnership with Pfizer. Remember, this content is for educational purposes only and does not replace discussions with a healthcare provider. PP-HYM-USA-1115 Show Notes: For safety information visit: https://labeling.pfizer.com/ShowLabeling.aspx?id=20916&Section=PPI For information on how to navigate your treatment journey, visit the Shared Decision-making Guide here. Listen and subscribe where you get your podcasts! #Hemophilia IMPORTANT SAFETY INFORMATION Important: Before you start using HYMPAVZI, it is very important to talk to your healthcare provider about using factor VIII and factor IX products or "bypassing agents" (products that help blood clot but work in a different way than HYMPAVZI). Your healthcare provider may prescribe factor VIII or factor IX medicines or bypassing agents to treat episodes of breakthrough bleeding during your treatment with HYMPAVZI. Carefully follow your healthcare provider's instructions regarding when to use these medicines and the prescribed dose during your treatment with HYMPAVZI. Do not use additional doses of HYMPAVZI to treat breakthrough bleeds. Before using HYMPAVZI, tell your healthcare provider about all of your medical conditions, including if you: have a planned surgery. Your healthcare provider may stop treatment with HYMPAVZI before your surgery. Talk to your healthcare provider about when to stop using HYMPAVZI and when to start it again if you have a planned surgery. have a severe short-term (acute) illness such as an infection or injury. have been told that you have a risk for blood clots. are pregnant or plan to become pregnant. HYMPAVZI may harm your unborn baby. Females who are able to become pregnant: Your healthcare provider will do a pregnancy test before you start your treatment with HYMPAVZI. Use effective birth control (contraception) during treatment with HYMPAVZI and for at least 2 months after the last dose of HYMPAVZI. Tell your healthcare provider right away if you become pregnant or think that you may be pregnant during treatment with HYMPAVZI. are breastfeeding or plan to breastfeed. It is not known if HYMPAVZI passes into your breast milk. Tell your healthcare provider about all the medicines you take, including prescription medicines, over-the-counter medicines, vitamins, and herbal supplements. If you inject too much HYMPAVZI, call your healthcare provider or the Poison Help Line at 1-800-222-1222 or go to the nearest hospital emergency room right away. What are the possible side effects of HYMPAVZI? HYMPAVZI may cause serious side effects, including: blood clots (thromboembolic events). HYMPAVZI may increase the risk for your blood to clot in blood vessels in your arm, leg, lung, or head, which can be life-threatening. Blood clots have happened in people using HYMPAVZI. You may have an increased risk of blood clots if you have certain risk factors. Stop using HYMPAVZI and get medical help right away if you develop any of these signs or symptoms of blood clots: swelling or pain in your arms or legs redness or discoloration in your arms or legs shortness of breath pain in chest or upper back fast heart rate cough up blood feeling faint headache numbness in your face eye pain or swelling trouble seeing allergic reactions. HYMPAVZI may cause allergic reactions, including rash and itching. Stop using HYMPAVZI and get medical help right away if you develop any of the following symptoms of a severe allergic reaction: swelling of your face, lips, mouth, or tongue trouble breathing wheezing dizziness or fainting fast heartbeat or pounding in your chest sweating The most common side effects of HYMPAVZI include: swelling, hardening, redness, bruising, bleeding, and pain at injection site headache fever joint pain diarrhea itching rash These are not all the possible side effects of HYMPAVZI. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088. What is HYMPAVZI? HYMPAVZI is a prescription medicine used regularly to prevent or reduce the frequency of bleeding episodes in adults and children 6 years of age and older with: hemophilia A with or without factor VIII inhibitors, or hemophilia B with or without factor IX inhibitors. It is not known if HYMPAVZI is safe and effective in people receiving ongoing Immune Tolerance Induction (ITI). It is not known if HYMPAVZI is safe and effective in children younger than 6 years of age.