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

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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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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

Hosted & Written by: Patrick James Lynch

Featured Advertiser:

Sanofi

Subscribe to the Global Hemophilia Report

Show Notes:

#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

Emil’s Story:

Join Emil as he opens up about his journey living with hemophilia and the profound impact it has had on his mental health. He emphasizes how the effects of hemophilia extend beyond physical symptoms and underscores the importance of recognizing its emotional and psychological challenges. Emil also highlights the need for comprehensive care that supports both the mental and physical health of children and adults living with hemophilia.

Click here to watch his story: https://www.youtube.com/watch?v=9ljWxS57-ZA&list=PLmqBxf22n4lPMpAfLe4yv8haC6Ejcp1XL&index=2

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

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

Cedric Hermans MD PhD FRCP

Senior Advisor: Donna DiMichele, MD

Hosted & Written by: Patrick James Lynch

Featured Advertiser:

Sanofi

Subscribe to the Global Hemophilia Report

Show Notes:

#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

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