Aging with Hemophilia: The Triumphs, Burdens, and Uncertainties of Longevity

Introducing the Global Hemophilia Report: Led by science, curiosity, and storytelling, the Global Hemophilia Report from BloodStream Media is an entertaining monthly journey through the investigations and science driving hemophilia research around the world. Produced by: Believe Limited &... by Global Hemophilia Report

1 min listen

Mental Health and Hemophilia in Adolescence and Young Adulthood: In March 2022, a Washington Post article highlighted children and adolescents in the US experiencing a mental health crisis, but how does a hemophilia diagnosis further complicate a young person’s mental wellbeing? What data exists to support... by Global Hemophilia Report

68 min listen

Prophylaxis: Protection, Achievements, and Shortcomings: Prophylaxis in hemophilia has led to extraordinary progress, however, recent studies suggest that although the overall musculoskeletal health of persons with hemophilia has significantly improved, the goal of attaining a level of musculoskeletal... by Global Hemophilia Report

59 min listen

Inhibitors: Prevention, Eradication, and Lived Experiences: Inhibitor development has long been considered the most significant complication of severe hemophilia, but with the licensure of the first non-factor therapy and a robust pipeline of novel and gene therapeutics being investigated, is it still of... by Global Hemophilia Report

41 min listen

Novel Therapies: Entering Uncharted Territory: Gene therapy, hemostatic rebalancing therapies, memetic therapies, and even factor replacement therapy are all currently being explored in clinical trials, but while these therapies are paving the way to historical treatment ease and efficacy, they... by Global Hemophilia Report

63 min listen

Bone and Joint Health: Monitoring and Detection Strategies: Even with the introduction of prophylaxis, the goal of achieving perfect bone and joint health for patients with hemophilia through normalizing homeostasis remains elusive. In this episode, we cover the current monitoring and detection strategies and... by Global Hemophilia Report

55 min listen

Hemophilia B & the story of Tsarevich Alexei - Part 1: Hemophilia B is a rare inherited X-linked disorder characterized by a congenital anomaly in the factor IX gene leading to a variable deficiency in clotting factor IX. In this episode, we explore the known differences between Hemophilia B and... by Global Hemophilia Report

58 min listen

Pain in Hemophilia - Part 2 - Exercise, Medication & Investigations: On this episode, we continue our discussion of chronic pain in hemophilia. We’ll discuss exercise, medication and investigations. Contributors: Nathalie Anne Roussel, PhD, MSc, PT Paul Mc Laughlin, BSc, MSc, MMACP Senior Advisor:... by Global Hemophilia Report

41 min listen

Women with Hemophilia: Research Priorities: Women, girls, and those with the potential to menstruate (WGPPM) who live with hemophilia, have more difficulty getting a diagnosis and accessing adequate care than their biological male counterparts. But why? What research is underway to support the... by Global Hemophilia Report

98 min listen

Mid-Point Conversations: A Summary: On this episode, Executive Producer of the , Patrick James Lynch, is joined in person by Senior Advisor, Dr. Donna DiMichele, and Writer/Host, Laurence Woollard, to reflect on Season 1 so far as well as debate existing and emerging research priorities... by Global Hemophilia Report

75 min listen

Pain in Hemophilia - Part 1 - Prevalence, Mechanisms, and Assessment: According to the Centers for Disease Control, pain is one of the most common reasons people seek medical care. However, for persons affected by hemophilia A and B, the experience of pain has provided the subtext for many issues related to health and... by Global Hemophilia Report

40 min listen

Where does research go from here? S1 Finale!: Renowned hematologist, researcher, and senior advisor to the Global Hemophilia Report Dr. Donna DiMichele shares some of her Season 1 takeaways and thoughts about the future of hemophilia research. Senior Advisor: Donna DiMichele, MD Hosted by:... by Global Hemophilia Report

29 min listen

Hemophilia B & the story of Tsarevich Alexei - Part 2: In Part 2 of our Hemophilia B episode, we spotlight research priorities into women with hemophilia B, novel therapies to treat people with hemophilia B, and we conclude the story of Alexei Nikolaevich, the last Tsesarevich of Russia. ... by Global Hemophilia Report

40 min listen

Social Drivers of Health in the Bleeding Disorders Community: The social determinants of health (SDH) are the non-medical factors that influence health outcomes. They are the conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaping the conditions of daily... by Global Hemophilia Report

43 min listen

Aging with Hemophilia: The Triumphs, Burdens, and Uncertainties of Longevity: There has been a remarkable increase in the life expectancy of persons living with (PLWH) over the past century, largely due to access to safe factor replacement products. However, the course of progress has been uneven, and rocky,... by Global Hemophilia Report

54 min listen

Sports, Fitness & Hemophilia - Evidence-based perspectives: Historically, people with hemophilia and especially children, have lived with considerable limitations when it comes to engagement in sports and athletics, thereby missing out on the numerous biopsychosocial and general health. However, both... by Global Hemophilia Report

46 min listen

Aging with Hemophilia: The Triumphs, Burdens, and Uncertainties of Longevity - Part 2: There has been a remarkable increase in the life expectancy of persons living with (PLWH) over the past century, largely due to access to safe factor replacement products. However, the course of progress has been uneven, and rocky, for... by Global Hemophilia Report

44 min listen

Telemedicine for the Care of Hemophilia: What Do We Gain And What Do We Lose?: Telehealth options are assumed to provide added benefit to providers and patients alike, but how much do we really know and understand about telemedicine? Listen in to the latest episode of Global Hemophilia Report as our contributors share how... by Global Hemophilia Report

48 min listen

Hemophilia Camps - Evidence of Benefit: Historically, camps for kids with hemophilia have played a specific and valuable role, enabling a young person with hemophilia to experience all the benefits of a traditional, summer camp experience. On this episode, we dig into the camp experience... by Global Hemophilia Report

47 min listen

Mild Hemophilia A: A Misnomer?: Persons with mild hemophilia have been shown to experience more bleeding - related morbidity than previously recognized while achieving lifespans that parallel the general population. Consequently, persons living with mild hemophilia are more likely... by Global Hemophilia Report

52 min listen

Sexual Health- An Unaddressed Need in Comprehensive Hemophilia Care: On this episode, we will address defining sexual health and its importance to hemophilia care, best practices and standards for addressing sexual health, implementing a practice of addressing sexual health into a comprehensive care model, envisioning... by Global Hemophilia Report

52 min listen

Barriers to Research in Hemophilia: On this episode we’re in conversation with research leaders to learn more about the current state of hemophilia research, the barriers and opportunities we're facing today, and what the future of hemophilia research might look like. ... by Global Hemophilia Report

42 min listen

Understanding Factor VIII & IX - In Coagulation and Beyond - How Much Are We Still Missing?: The topic of discussion for this episode leans more toward the scientific side but has huge clinical relevance. For today, we will be asking our expert panel to lend their experience and expertise to the topic of FVIII and FIX, which we will be... by Global Hemophilia Report

49 min listen

LGBTQ+ Health- Addressing Specific Needs in Comprehensive Hemophilia Care: In this episode, we address the critical intersections of LGBTQ+ health and hemophilia care. Delving into the historical links with the HIV crisis, we scrutinize the disparities in care access, the mental health implications, and the unique challenges... by Global Hemophilia Report

57 min listen

Hemophilia Gene Therapy Redux – The End of the Beginning?: Gene therapy for hemophilia A and B now exists as a licensed, prescribable treatment option for patients in certain countries; however, many questions and challenges remain. Senior advisor Dr. Donna DiMichele and patient-host Patrick James Lynch speak... by Global Hemophilia Report

61 min listen

The US National Research Blueprint (NRB): The US National Research Blueprint (NRB). Thriving in the Face of an Inheritable Bleeding Disorder Begins with Community-Inspired Research. Contributors: Len Valentino, MD Keri Norris, MD Maria Santaella, MD Michael Recht, MD Sammie... by Global Hemophilia Report

60 min listen

PTSD & Hemophilia: Join us as we shed light on the often-overlooked intersection of Post Traumatic Stress Disorder (PTSD) and Hemophilia, discussing innovative treatments, personal stories, and the journey towards understanding and managing these complex disorders.... by Global Hemophilia Report

55 min listen

Translating Patient-Reported Clinical Outcomes into Patient-Informed Clinical Research Outcomes: In this episode, delve into the transformative journey of patient-reported outcomes measures (PROMs) within hemophilia care, exploring their evolution from broad assessments of health-related quality of life to nuanced evaluations of physical ability,... by Global Hemophilia Report

51 min listen

World Hemophilia Day: On this episode of the Global Hemophilia Report, host Patrick James Lynch is on location in Madrid, Spain for the WFH 2024 World Congress. Patrick talks about the history of World Hemophilia Day and talks with some of the attendees at the congress.... by Global Hemophilia Report

26 min listen

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Aging with Hemophilia: The Triumphs, Burdens, and Uncertainties of Longevity

Aging with Hemophilia: The Triumphs, Burdens, and Uncertainties of Longevity

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