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Hemophilia in the Real World: Patient Engagement in Registries & Data Collection

Release Date: 07/31/2025

Global Hemophilia Report

In this special episode, host Patrick James Lynch reflects on turning forty…and on forty years of life with hemophilia. Joined by Dr. Donna DiMichele, Patrick traces the parallel evolution of his own experience and the hemophilia community’s journey through crisis, discovery, and innovation. From the HIV epidemic of the 1980s to the arrival of gene therapy and digital health, they explore how science, data, and humanity have shaped the story of hemophilia. Together, they ask: what have we learned, what still can’t be measured, and what might the next forty years hold? Guests: Donna...

There’s Nothing New for Me in the Pipeline (Clinical Trials & Patient Participation)

Global Hemophilia Report

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,...

Yes, Women Have Hemophilia: Knowledge Gaps, Diagnostic Delays & the Fight for Equity

Global Hemophilia Report

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the challenges women face in getting diagnosed, the persistent gaps in clinical research and care, and the impact of outdated language and systemic bias.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 ...

Hemophilia in the Real World: Patient Engagement in Registries & Data Collection

Global Hemophilia Report

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. ...

I’m Fine. This Is Normal. Old Faithful Works for Me! Mental Health Challenges to Progress

Global Hemophilia Report

On this episode, we explore the concept of shared decision making (SDM) in modern hemophilia care. With insights from experts Brendan Hayes and Dr. Cedric Hermans, the discussion explores the evolution of treatment options, patient education, and the collaborative decision-making process. The conversation also highlights the development and impact of the SDM tool by the World Federation of Hemophilia, emphasizing the importance of patient empowerment and ongoing education. Guests: Kate Bazinsky Randy Curtis Debbie de la Riva Jackie Bottacari Senior Advisor: Donna DiMichele, MD...

Maybe We’re Not on the Same Page: Shared Decision Making in Hemophilia Care

Global Hemophilia Report

On this episode, we delve into the concept of shared decision making (SDM) in modern hemophilia care. With insights from experts Brendan Hayes and Dr. Cedric Hermans, the discussion explores the evolution of treatment options, patient education, and the collaborative decision-making process. The conversation also highlights the development and impact of the SDM tool by the World Federation of Hemophilia, emphasizing the importance of patient empowerment and ongoing education. Guests: Brendan Hayes, MPH, CPH Senior Advisor: Donna DiMichele, MD Hosted & Written by:...

Are We Measuring the Right Stuff?

Global Hemophilia Report

On this episode of the Global Hemophilia Report, we discuss the limitations of current hemophilia care metrics. They explore the importance of measuring the impact on quality of life, the role of nurse-patient relationships, and the challenges faced by underrepresented patient groups, such as those with moderate hemophilia and women. Guests: Brittany Savage, NP Cathy Harrison, RN, Adv Dip, BMedSci, MSc Senior Advisor: Donna DiMichele, MD Hosted & Written by: Patrick James Lynch Featured Advertiser: Subscribe to the Show Notes: ...

Health Literacy is Health Equity, and It Matters

Global Hemophilia Report

On this episode of the Global Hemophilia Report, we explore the critical topic of health literacy and its direct impact on health equity within the bleeding disorders community. Featuring insights from experts, the discussion highlights the urgent need to address gaps in health literacy to ensure better medical outcomes. The episode also examines the challenges posed by recent rollbacks of diversity, equity, and inclusion policies and presents innovative solutions being utilized to bridge these gaps. Guests: Kerry Funkhouser, EdD Brendan Hayes, MPH, CPH Paula James, MD Magdalena...

Global Advocacy at the Organizational Level

Global Hemophilia Report

On this episode of the Global Hemophilia Report, we speak with guests who are each pioneering hemophilia advocacy in their respective regions. The discussion highlights the pivotal role of data and patient storytelling in driving systemic change and policy advancements. The episode emphasizes how global collaboration and technological innovations are paving the way for more equitable hemophilia care worldwide. Guests: Harshal Kale, World Federation of Hemophilia Matthew Delaney, National Bleeding Disorders Foundation Megan Adediran, Hemophilia of Nigeria Senior Advisor:...

What We've Learned - Season 3

Global Hemophilia Report

On this episode of the Global Hemophilia Report, host Patrick James Lynch and Senior Advisor Dr. Donna DiMichele review significant discussions from the season on therapeutic advancements, patient advocacy, and critical hematological research. They highlight key topics explored, such as the evolving therapeutic landscape, the role of data and patient involvement in advancing hemophilia care, and the persisting challenges in treatment, particularly for hemophilia B patients. The episode also addresses the impact of artificial intelligence in research and the importance of securing funding for...

More Episodes

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/

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