Ask The Expert Presents Hemophilia on Balance

This week on Ask The Expert, the script is being flipped for patients with inhibitors and rare factor deficiencies! For years, treatment options were scarce—or even nonexistent. Now, rebalancing agents are changing the game, restoring clotting balance without relying on replacement factors. Amy is joined by Dr. Ben Samuelson Jones, Dr. Tammy Singleton, Dr. Patrick Ellsworth, and Dr. Mark Redding as they take listeners on a journey through how these groundbreaking therapies are bringing new hope to people with hemophilia B, inhibitors, and ultra-rare bleeding disorders. From inhibitors to ultra-rare conditions, this episode dives into the science, stories, and breakthroughs that are reshaping the future of bleeding disorder care. Don’t miss it! Presenting Sponsor: Presented by Sanofi Join Shellye as she shares her inspiring journey as a woman living with hemophilia. After years of unanswered questions, her diagnosis highlights the critical role of health literacy in bridging care gaps. Through advocacy, Shellye raises awareness and empowers underserved communities. Watch her story and see how health literacy can break barriers and transform lives. Click here to watch her story: Sanofi – See Hemophilia Through My Eyes: Women & Girls For too long, women and girls who bleed have been dismissed. Left out of the narrative. Ignored by the system. But not anymore. In our new film, “Dismissed,” meet Isabelle—a 15-year-old with hemophilia who’s using her voice to uplift the unheard. Alongside her are four powerful stories of women challenging what’s "normal" and demanding recognition, care, and justice. This is more than a film. It’s a movement. 📽️ Watch and share the trailer now. Learn more at http://dismissedfilm.com/ Show Notes: Ask the Expert is produced by Believe Limited, and is found only on the BloodStream Media Podcast Network. Presented by Sanofi Subscribe to the Ask the Expert Did you know BloodStreamMedia.com is your one-stop shop for all podcasts for the bleeding disorders and rare disease community? → BloodStreamMedia.com → BloodStream Media on Facebook → BloodStream Media on Instagram → BloodStream Media on LinkedIn

In this episode of Ask the Expert, we revisit some of the most helpful metaphors, analogies, and insights that have helped us understand the complex world of rebalancing agents in hemophilia treatment. From car engines and domino chains to seesaws and treasure maps, host Amy—along with expert voices like Dr. Patrick Ellsworth, Dr. Ben Samelson-Jones, Dr. Amy Dunn, and Dr. Tami Singleton—helps connect the dots between clotting pathways, thrombin bursts, and the exciting role rebalancing agents may play in restoring equilibrium. Presenting Sponsor: Presented by Sanofi Join Shellye as she shares her inspiring journey as a woman living with hemophilia. After years of unanswered questions, her diagnosis highlights the critical role of health literacy in bridging care gaps. Through advocacy, Shellye raises awareness and empowers underserved communities. Watch her story and see how health literacy can break barriers and transform lives. Click here to watch her story: Sanofi – See Hemophilia Through My Eyes: Women & Girls For too long, women and girls who bleed have been dismissed. Left out of the narrative. Ignored by the system. But not anymore. In our new film, “Dismissed,” meet Isabelle—a 15-year-old with hemophilia who’s using her voice to uplift the unheard. Alongside her are four powerful stories of women challenging what’s "normal" and demanding recognition, care, and justice. This is more than a film. It’s a movement. 📽️ Watch and share the trailer now. Learn more at http://dismissedfilm.com/ Show Notes: Ask the Expert is produced by Believe Limited, and is found only on the BloodStream Media Podcast Network. Presented by Sanofi Did you know BloodStreamMedia.com is your one-stop shop for all podcasts for the bleeding disorders and rare disease community? → BloodStreamMedia.com → BloodStream Media on Facebook → BloodStream Media on Instagram → BloodStream Media on LinkedIn

In this episode of Ask the Experts, host Amy Board breaks down one of the most exciting developments in bleeding disorders treatment — rebalancing agents. Think of your body’s clotting system like a seesaw: when everything’s working right, it’s balanced. But in bleeding disorders, the scale tips. Instead of adding what’s missing (like clotting factors), rebalancing agents work by removing what’s getting in the way — helping to restore that balance in a totally new way. Amy is joined by Dr. Ben Samuelson Jones, Dr. Patrick Ellsworth, and Dr. Tami Singleton for a deep dive into how these therapies work, how they were inspired by what’s already happening naturally in the body, and what makes them so promising. From TFPI antibodies to small interfering RNA treatments like Fitusiran, these cutting-edge approaches could transform care for many. The experts also discuss the crucial role of patient participation in ongoing studies and why your voice matters in shaping the future of treatment. It’s a hopeful, eye-opening conversation about how innovation is changing the game for bleeding disorders — and what comes next. Presenting Sponsor: Presented by Sanofi For too long, women and girls who bleed have been dismissed. Left out of the narrative. Ignored by the system. But not anymore. In our new film, “Dismissed,” meet Isabelle—a 15-year-old with hemophilia who’s using her voice to uplift the unheard. Alongside her are four powerful stories of women challenging what’s "normal" and demanding recognition, care, and justice. This is more than a film. It’s a movement. 📽️ Watch and share the trailer now. Learn more at http://dismissedfilm.com/ Sanofi’s Global Hemophilia Survey uncovers significant care gaps and emotional challenges faced by patients and caregivers. Learn how improving health literacy and fostering better patient-provider communication are essential to addressing these inequities. Explore the findings and see how Sanofi is driving health equity for the hemophilia community. Explore the survey findings here: Global Hemophilia Survey Page. Show Notes: Ask the Expert is produced by Believe Limited, and is found only on the BloodStream Media Podcast Network. Presented by Sanofi Subscribe to the Ask the Expert Did you know BloodStreamMedia.com is your one-stop shop for all podcasts for the bleeding disorders and rare disease community? → BloodStreamMedia.com → BloodStream Media on Facebook → BloodStream Media on Instagram → BloodStream Media on LinkedIn

In this episode, Amy trades medical jargon for construction metaphors as she takes us on a journey through hemostasis, the body’s natural way of stopping a bleed. But what happens when the repair crew is understaffed—or missing entirely? That’s where factor replacement therapy comes in. Amy and our experts explain how it works, why timing matters, and how it helps people with bleeding disorders live safer, fuller lives. Whether you're new to the community or a longtime listener, you'll walk away with a better understanding of how the body works—and why treatment makes such a big difference. Presenting Sponsor: Presented by Sanofi #MyHemophiliaTruth. Real stories. Powered by Sanofi. It’s time to consider the whole experience when it comes to managing hemophilia and change the conversation. Explore the full story at www.myhemophiliatruth.com The Bigger Picture in Hemophilia B: Hemophilia A and hemophilia B are different bleeding disorders with unique pathologies and clinical features.1 Due to the distinct behavior of factor IX, multiple PK parameters should be considered when assessing bleed prevention. Learn how a broader view of PK may influence evaluation of treatment and management for patients with hemophilia B.2,3 Learn more at thebiggerpictureinhemb.com 1. Castaman G, Matino D. Haematologica. 2019;104(9):1702-1709. 2. Dolan G, Benson G, Duffy A, et al. Blood Rev. 2018;32(1):52-60. 3. Mann DM, Stafford KA, Poon M-C, Matino D, Stafford DW. Haemophilia. 2021;27(3):332-339. Show Notes: Ask the Expert is produced by Believe Limited, and is found only on the BloodStream Media Podcast Network. Presented by Sanofi Subscribe to the Ask the Expert Did you know BloodStreamMedia.com is your one-stop shop for all podcasts for the bleeding disorders and rare disease community? → BloodStreamMedia.com → BloodStream Media on Facebook → BloodStream Media on Instagram → BloodStream Media on LinkedIn

On this exciting episode of Ask the Expert, join Amy as we delve into the fascinating world of blood clotting and anticoagulant therapy. We'll explore the clotting process with fun and relatable party analogies, featuring expert insights from Dr. Ben and Dr. Patrick. Discover how vital components like Protein C, Protein S, antithrombin, and TFPI work together to maintain the body's delicate clotting balance, and learn about the latest advancements in hemophilia treatment in this engaging and educational deep dive! Presenting Sponsor: Presented by Sanofi #MyHemophiliaTruth. Real stories. Powered by Sanofi. It’s time to consider the whole experience when it comes to managing hemophilia and change the conversation. Explore the full story at www.myhemophiliatruth.com Mark’s Story Join Mark as he shares about his experience living with hemophilia, including the impact it had on building and maintaining relationships throughout grade school, college, dating, and raising his family. Mark also highlights how shared decision making with his healthcare providers, and strong family and caregiver support in those decisions, can make all the difference when it comes to managing the daily challenges of hemophilia. Click here to watch his story: https://www.youtube.com/watch?v=tQ8oeM0zL24&list=PLmqBxf22n4lPMpAfLe4yv8haC6Ejcp1XL&index=8 Show Notes: Ask the Expert is produced by Believe Limited, and is found only on the BloodStream Media Podcast Network. Presented by Sanofi Did you know BloodStreamMedia.com is your one-stop shop for all podcasts for the bleeding disorders and rare disease community? → BloodStreamMedia.com → BloodStream Media on Facebook → BloodStream Media on Instagram → BloodStream Media on LinkedIn

Dive into the crucial roles of Factor VIII, Factor IX, and thrombin in the blood clotting process. Hosts Amy and Patrick introduce expert Dr. Benjamin J. Samelson-Jones to discuss the interplay between these factors, including how they activate each other and form clots. Featuring insights from Dr. Mark Reding on the myriad functions of thrombin, this episode breaks down complex biochemical processes into easily digestible information for all listeners. Perfect for anyone looking to understand hemostasis and thrombosis better. Presenting Sponsor: Presented by Sanofi Show Notes: Ask the Expert is produced by Believe Limited, and is found only on the BloodStream Media Podcast Network. Presented by Sanofi Subscribe to the Ask the Expert Did you know BloodStreamMedia.com is your one-stop shop for all podcasts for the bleeding disorders and rare disease community? → BloodStreamMedia.com → BloodStream Media on Facebook → BloodStream Media on Instagram → BloodStream Media on LinkedIn

This episode of "Ask the Expert" titled "Striking the Right Balance – Why Does it Matter in Hemophilia Treatment?" delves into the concept of rebalancing in hemophilia treatment. Hosted by Amy Bord, the episode features expert insights from Dr. Ben Samuelson Jones, Dr. Patrick Ellsworth, and Dr. Mark Redding. They explain how hemophilia treatments can go beyond merely replacing missing clotting factors by using rebalancing agents that adjust anticoagulant proteins. The conversation emphasizes the importance of understanding the delicate balance between bleeding and clotting in the body, why this knowledge is vital for treatment decisions, and introduces the new class of medications called rebalancing agents. The episode also highlights the role of individual bleeding tendencies in determining appropriate treatments. Presenting Sponsor: Presented by Sanofi Show Notes: Ask the Expert is produced by Believe Limited, and is found only on the BloodStream Media Podcast Network. Presented by Sanofi Subscribe to the Ask the Expert Did you know BloodStreamMedia.com is your one-stop shop for all podcasts for the bleeding disorders and rare disease community? → BloodStreamMedia.com → BloodStream Media on Facebook → BloodStream Media on Instagram → BloodStream Media on LinkedIn

In this episode of 'Ask the Expert,' host Amy Board dives into the clotting cascade and explains how our blood clots. Alongside experts Dr. Ben Samuelson Jones, Dr. Amy Dunn, Dr. Mark Redding, and Dr. Patrick Ellsworth, Amy unpacks the complexity of the hemostatic system, discusses new treatments for hemophilia, and explores both the clotting and regulating parts of this vital bodily function. Tune in to understand how the clotting system works and the exciting potential of new therapies in the field. Presenting Sponsor: Presented by Sanofi Show Notes: Ask the Expert is produced by Believe Limited, and is found only on the BloodStream Media Podcast Network. Presented by Sanofi Subscribe to the Ask the Expert Did you know BloodStreamMedia.com is your one-stop shop for all podcasts for the bleeding disorders and rare disease community? → BloodStreamMedia.com → BloodStream Media on Facebook → BloodStream Media on Instagram → BloodStream Media on LinkedIn

Ask the Expert is back with a twelve-episode deep dive into the evolving landscape of a groundbreaking new class of therapies in hemophilia treatment—rebalancing agents. Through expert insights and discussions, our new season, Hemophilia: On Balance, unpacks complex science to make it accessible and relevant to the hemophilia community. Episodes will be released monthly starting March 2025, with bonus content dropping weekly. Whether you’re a patient, caregiver, or healthcare provider, Ask the Expert empowers you to understand the latest advances and make informed decisions about hemophilia care. Presenting Sponsor: Presented by Sanofi Show Notes: Ask the Expert is produced by Believe Limited, and is found only on the BloodStream Media Podcast Network. Presented by Sanofi Subscribe to the Ask the Expert Did you know BloodStreamMedia.com is your one-stop shop for all podcasts for the bleeding disorders and rare disease community? → BloodStreamMedia.com → BloodStream Media on Facebook → BloodStream Media on Instagram → BloodStream Media on LinkedIn

Our guest for this month is Believe Limited CEO and Bloodstream host, Patrick James Lynch. Ask the Expert is headed in a new direction and Patrick joins us to share what the future will hold for the Bloodstream Media network. Even though this will be the final episode of Ask the Expert, we are excited to announce the new path for our expert interviews, because they’re not going away! Listen in with Patrick and Amy as they share the new and exciting things coming from Bloodstream Media! Welcome to Episode 40, or To the Future! The final episode of the Ask The Expert Podcast! Check out all the podcast offerings from Bloodstream Media: https://www.bloodstreammedia.com/ Register for the virtual Bleeding Disorder Conference here: https://events.hemophilia.org/ehome/bleedingdisordersconference/about/?&_ga=2.12224756.1785968952.1589565712-1855623951.1578586058

Join us for our “Get to Know the Expert” episode of Ask the Expert! Having the opportunity to know our national leaders in a personal way is an honor and a treat for any community. Join us on today’s episode to get to know CEO the National Hemophilia Foundation, Dr. Len Valentino! We’ll learn how Dr. Valentino got his start, what lessons he learned from treating patients, his interests in the global disparity of care, and his thoughts of the Michael Jordan documentary, The Last Dance! Join us to get to know Dr. Valentino a little better! Welcome to Episode 39 - or our Get to Know the Expert Episode - of the Ask The Expert Podcast! Check out the weekly webinar series provided by the National Hemophilia Foundation here: The National Hemophilia Foundation: https://www.hemophilia.org/ Register for the virtual Bleeding Disorder Conference here: https://events.hemophilia.org/ehome/bleedingdisordersconference/about/?&_ga=2.12224756.1785968952.1589565712-1855623951.1578586058

The National Hemophilia Foundation announced new leadership in Dr. Len Valentino weeks before the COVID-19 outbreak and his unique position to guide our community during this unprecedented time has been welcome. Dr. Valentino joins us on Ask the Expert this month to share a bit of his story and his thoughts on the pandemic could affect the bleeding disorder community. Dr. Valentino shares how NHF is addressing the current COVID pandemic, NHF’s national research agenda, and how COVID could impact the shift in treatment in hemophilia. We’ll also chat about the Bleeding Disorder Conference going virtual this year, so join us for a can’t miss episode of Ask the Expert! Welcome to Episode 39 - or our Dr. Valentino Episode - of the Ask The Expert Podcast! Check out the weekly webinar series provided by the National Hemophilia Foundation here: The National Hemophilia Foundation: https://www.hemophilia.org/ Register for the virtual Bleeding Disorder Conference here: https://events.hemophilia.org/ehome/bleedingdisordersconference/about/?&_ga=2.12224756.1785968952.1589565712-1855623951.1578586058

Join us for our “Get to Know the Expert” episode of Ask the Expert! Having the opportunity to know our national leaders in a personal way is an honor and a treat for any community. Join us on today’s episode to get to know CEO of Hemophilia Federation of America (HFA), Sharon Meyers, as she begins her tenure at the organization. Sharon shares how she became involved in non-profit work, her passion and philosophy on fundraising, and how she became involved within the bleeding disorder community! Join us to hear more about Sharon’s personal journey and what makes her tick! A fun episode of Ask the Expert! Welcome to Episode 38 - or our Get to Know the Expert Episode - of the Ask The Expert Podcast! Check out the terrific resources from the Hemophilia Federation of America in the midst of COVID-19 outbreak: Hemophilia Federation of America: https://www.hemophiliafed.org/ HFA COVID-19 Resources Page: https://www.hemophiliafed.org/news-stories/2020/04/coronavirus-covid-19-what-hfa-is-doing/ HFA COVID-19 Relief Fund: https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/financial-assistance/covid-19-relief-fund/ HFA Helping Hands Financial Assistance Program: https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/financial-assistance/helping-hands-emergency-assistance/ NHF Informational Webinars during COVID Crisis: https://www.hemophilia.org/

During this period of unprecedented turmoil and uncertainty, the bleeding disorder community has found comfort in the Hemophilia Federation of America’s (HFA) messaging and voice. Newly-minted CEO of HFA, Sharon Meyers, joins us to share the behind the scenes work HFA has done to prepare statements, resources, and education during the COVID pandemic. She shares how HFA has set up a COVID-19 Relief Fund, as well as utilizing their foundational Helping Hands financial assistance program to provide support to community members during the crisis. Sharon stops by to share her vision for HFA going forward and how increased communication with NHF sets both organizations up for success. Join us for another great episode of Ask the Expert! Welcome to Episode 38 - or our Meet Sharon Meyers Episode - of the Ask The Expert Podcast! Check out the terrific resources from the Hemophilia Federation of America in the midst of COVID-19 outbreak: Hemophilia Federation of America: https://www.hemophiliafed.org/ HFA COVID-19 Resources Page: https://www.hemophiliafed.org/news-stories/2020/04/coronavirus-covid-19-what-hfa-is-doing/ HFA COVID-19 Relief Fund: https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/financial-assistance/covid-19-relief-fund/ HFA Helping Hands Financial Assistance Program: https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/financial-assistance/helping-hands-emergency-assistance/ NHF Informational Webinars during COVID Crisis: https://www.hemophilia.org/

Join us for our “Get to Know the Expert” episode featuring Brian Ragaishis! Brian is a teenager with vWD who created the website Live Smart, Play Smart, a community where other teens affected by bleeding disorders can share their story. In today’s episode, we hear about what it was like for Brian when he was diagnosed with vWD and how he felt isolated from his friends. How did he manage and why did he think it was important for other teens to share their story? Check out this great episode and if you know an amazing teen affected by a bleeding disorder doing incredible things for their community, nominate them for the Teen Impact Award at www.teenimpactawards.com Welcome to Episode 37 Part 2- or our Get to Know the Expert Episode - of the Ask The Expert Podcast! Check out the following resources mentioned in our episode: Nominate a teen for the Teen Impact Awards: https://www.teenimpactawards.com/ Apply for the Adam Lynch Scholarship here: https://www.teenimpactawards.com/scholarship To learn more about Live Smart, Play Smart and share your story: https://www.livesmartplaysmart.com/ To learn more about Bleeding Disorders Awareness Month and how you can contribute: https://redtiecampaign.org/

So much of our community programming and education is focused around teenagers and yet oftentimes our teenagers seem like mysteries to us. What is it like being a teen with a bleeding disorder and what would make their lives easier? To celebrate Bleeding Disorders Awareness Month we asked teen, Brian Ragaishis, to join us on Ask the Expert to share why he created Live Smart, Play Smart, a website that creates community for other teens affected by bleeding disorders by telling their story. Brian, a former Teen Impact Award winner, joins us to share how the idea was born and why it was so important to connect with his peers. A unique episode of Ask the Expert! Welcome to Episode 37 - or our Live Smart, Play Smart Episode - of the Ask The Expert Podcast! Check out the following resources mentioned in our episode: Nominate a teen for the Teen Impact Awards: https://www.teenimpactawards.com/ Apply for the Adam Lynch Scholarship here: https://www.teenimpactawards.com/scholarship To learn more about Live Smart, Play Smart and share your story: https://www.livesmartplaysmart.com/ To learn more about Bleeding Disorders Awareness Month and how you can contribute: https://redtiecampaign.org/

In our first month of Ask the Expert’s new format we welcome you to our extended conversation with Dr. Jonathan Roberts, a hematologist with the Bleeding and Clotting Disorders Institute. In this bonus episode, we continue our conversation with Dr. Roberts where we learn how growing up with hemophilia led him to a passion for science and later on, medical school. We’ll hear his thoughts on what it has been like to be a physician and a patient during this paradigm shift in treatment for hemophilia and his thoughts about getting into the medical field for those interested in science. Join us as we get to know more of Dr. Roberts personal story! Welcome to Episode 36 - or our Get to Know the Expert - of the Ask The Expert Podcast! Check out the following resources Dr. Roberts mentioned for more information: The Importance of HTC Care: https://stepsforliving.hemophilia.org/basics-of-bleeding-disorders/hemophilia-treatment-centers Find Your Local Chapter: https://www.hemophilia.org/Community-Resources/Chapter-Directory National Hemophilia Foundation: www.hemophilia.org

Growing up with hemophilia shaped how Dr. Jonathan Roberts encourages his patients every day. As the Associate Medical Director of the Bleeding and Clotting Disorder Institute, Dr. Roberts as had the opportunity to give back to the community he is personally connected to. Join us for a unique Ask the Expert with Dr. Roberts as he shares his thoughts on future treatments for hemophilia, his research on creating a better assay for von Willebrands diagnosis, and his passion for encouraging patients to become their own experts on their healthcare. A must listen for the bleeding disorder community! Welcome to Episode 36 - Part 1 - of the Ask The Expert Podcast! Check out the following resources Dr. Roberts mentioned for more information: The Importance of HTC Care: https://stepsforliving.hemophilia.org/basics-of-bleeding-disorders/hemophilia-treatment-centers Find Your Local Chapter: https://www.hemophilia.org/Community-Resources/Chapter-Directory National Hemophilia Foundation: www.hemophilia.org

As we begin the new year many of us are encouraged to follow through on goals we have set for ourselves, but the stress involved with sticking to it and following through can affect our mental and emotional well-being. Debbie de la Riva from Mental Health Matters Too stops by to share some things to keep in mind about creating actual habit and behavior change as we work towards our goals. As a community leader encouraging awareness and education around mental health, Debbie will also share what we can expect in 2020 and her growing partnership with Believe Limited and the National Hemophilia Foundation. Start your new year off right and join us for another terrific episode of Ask the Expert! Welcome to Episode 35 - or our New Year’s Resolutions Watch-Out’s Episode - of the Ask The Expert Podcast! Program Notes: Check out the following resources for more information: Mental Health Matters Too Website: http://mentalhealthmatterstoo.com/ Resource Guide: http://mentalhealthmatterstoo.com/resources/ The Power of Habit by Charles Duhigg

von Willebrand disease is the most common bleeding disorder affecting 1% of our population and yet, it is the most unknown. Research for von Willebrand disease (vWD) continues to be elusive for patients and physicians alike causing frustration and emotional toil for those affected. On this episode of Ask the Expert, we welcome vWD hematologist and researcher, Dr. Christopher Ng M.D., from the University of Colorado Hemophilia and Thrombosis Center to share the latest from the medical community on diagnosis procedures, treatment, and the emotional struggle patients and their families experience as they search for concrete answers to their symptoms. Dr. Ng answers questions from our listeners with a thoughtful and compassionate approach to a complex disorder. Join us for a special episode of Ask the Expert developed for our vWD community! Welcome to Episode 34 - or our vWD Research Update Episode - of the Ask The Expert Podcast! There are several national conferences for von Willebrand patients and their caregivers, as well as online resources. Check out the following resources for more information: Foundation for Women & Girl with Blood Disorders http://www.fwgbd.org/ NOW (National Outreach for von Willebrand) Conference - National conference for von Willebrand’s disease hosted by the Arizona Hemophilia Association: https://www.arizonahemophilia.org/now/ Victory for Women: https://victoryforwomen.org/ vWD Connect Foundation, hosts a national conference for vWD Type 3 every year: https://vwdconnect.org/ National Hemophilia Foundation hosts a vWD track at the National Conference: https://www.hemophilia.org/ “An accurate vWD diagnosis could take multiple times because it can be affected by patient stress, heavy exercise or inflammation.” Dr. Christopher Ng, M.D. “vWD researchers are looking beyond just levels - they are looking at other genetic makeup that could affect bleeding.” Dr. Christopher Ng, M.D. “vWD and platelets work together as a team to start the clotting process - you need both and they are hard to tell apart. .” Dr. Christopher Ng, M.D.