In this episode, we take a deep dive into the state of the treatment pipeline for bleeding disorders. From the way clinical trials are structured to what’s actually available for different conditions, we examine both the promise and the reality of innovation in this space. Recorded live at the NBDF Bleeding Disorders Conference, we join Mike Recht, MD, PhD, Chief Science and Medical Officer of NBDF, for a “research posters walk & talk” to explore what’s happening right now — and why so many promising treatments never make it to market.

Guests:

Mike Recht, MD, PhD

Maria Santaella, PhD(c), MSN, RN-BC, CPHON

Samantha Carlson, LMSW

Senior Advisor: Donna DiMichele, MD

Hosted by: Patrick James Lynch

Written by: Kay Vermeil

Featured Advertiser:

Sanofi

Subscribe to the Global Hemophilia Report

Show Notes:

Join Kevin as he shares about his journey with hemophilia and the hurdles he faced in communicating with friends, family, and healthcare providers about his condition. He highlights how hemophilia affects far more than just physical health — and why honest, open conversations that focus on the full patient experience, not just symptoms, are so essential.

Click here to watch his story: https://www.youtube.com/watch?v=3v1cCTbhClA&list=PLmqBxf22n4lNK82h3QZ-9YlpIjYdzDOer&index=5

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.

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This episode of the Global Hemophilia Report explores the long-overdue conversation about women with hemophilia. Experts discuss the challenges women face in getting diagnosed, the persistent gaps in clinical research and care, and the impact of outdated language and systemic bias. The panel highlights the need for better data, more inclusive clinical trials, and a shift in medical culture to ensure women with hemophilia are recognized and prioritized.

Guests:

Andra James, MD, MPH

Michelle Sholzberg MDCM, FRCPC, MSc.

Dawn Rotellini

Len Valentino, MD

Robert Sidonio, Jr., MD

Senior Advisor: Donna DiMichele, MD

Hosted by: Patrick James Lynch

Written by: Kay Vermeil

Featured Advertiser:

Sanofi

Subscribe to the Global Hemophilia Report

Show Notes:

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/

Connect with the Global Hemophilia Report

Global Hemophilia Report on LinkedIn

Global Hemophilia Report on X/Twitter

Global Hemophilia Report on Facebook

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook

BloodStream on X/Twitter

In this episode of the Global Hemophilia Report, host Patrick James Lynch and a panel of experts discuss the importance of real world data and patient engagement in hemophilia care. The conversation explores how data collected outside of clinical trials provides deeper insights into treatment outcomes, challenges, and lived experiences. Guests share strategies for improving data reliability, motivating patient participation, and balancing privacy with research needs. Tune in for key takeaways on how both numbers and personal stories shape better care for the hemophilia community.

Guests:

Mike Recht, MD, PhD, MBA

Samantha Gouw, MD, PhD

Maria Santaella, RN-BC, MSN, PhD(c)

Senior Advisor: Donna DiMichele, MD

Hosted by: Patrick James Lynch

Written by: Kay Vermeil

Featured Advertiser:

Sanofi

Subscribe to the Global Hemophilia Report

Show Notes:

Presenting Sponsor:

Presented by Sanofi

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.

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/

Connect with the Global Hemophilia Report

Global Hemophilia Report on LinkedIn

Global Hemophilia Report on X/Twitter

Global Hemophilia Report on Facebook

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook

BloodStream on X/Twitter