In this episode, Maj Friberg Birkedal, Chair of the EAHAD Nurses Committee and Paediatric Nurse in Thrombosis and Haemostasis, discusses how the Neria™ Guard infusion set may help reduce pain and distress for children receiving emicizumab. Drawing on real-world experience, she highlights why even small innovations can make a big difference in paediatric care.
📰 Read the article: https://pubmed.ncbi.nlm.nih.gov/38462765/
In this episode of "Meet the Author", Daniel C. Ogrezeanu discusses his recent paper on "Acute neuromuscular and perceptual responses to blood flow restriction exercise in adults with severe haemophilia: a pilot study". Learn more about the safety and effects of blood flow restriction exercise in people with severe haemophilia.
Read the full article: https://onlinelibrary.wiley.com/doi/10.1111/hae.15084
Contact the author: daniel.ogrezeanu@uv.es
This episode features Paul Mclaughlin and Paula Loughnane interviewing him about his recent paper "Exercise-based telerehabilitation for the management of chronic pain in people with severe haemophilia: a mixed-methods feasibility study".📰 Read the article: https://pilotfeasibilitystudies.biomedcentral.com/articles/10.1186/s40814-024-01550-z
This episode features Johan Blokzijl and Paula Loughnane interviewing him about his recent paper "A Clinical Practice Guideline for Primary Care Physiotherapy in Patients with Haemophilia". 📰 Read the article on the EAHAD Website: https://www.eahad.org/eahad-projects/physiotherapists-committee-projects/ 🎥 Watch the episode on the EAHAD Academy: https://academy.eahad.org/eahad/2024/meet-the-author-series-johan-blokzijl/4150266
Welcome to our podcast series, today we interview Maria Elisa Mancuso, Senior Hematology Consultant Center for Thrombosis and Hemorrhagic Diseases, IRCCS Humanitas Research Hospital Milan, and Yesim Dargaud, head of the Clinical Haemostasis Unit at Lyon University Hospitals and the coordinator of the French reference centre for haemophilia to discuss the critical topic of managing surgery in haemophilia patients with inhibitors. Major surgeries for this unique patient population demand specialized expertise, a coordinated multidisciplinary team, and cutting-edge therapeutic strategies. 🎥 The full module is available on the EAHAD Academy: https://academy.eahad.org/eahad/2024/module-132-surgery-in-patients-with-haemophilia/4147547
Welcome to our podcast series, today we interview Maria Elisa Mancuso, Senior Hematology Consultant Center for Thrombosis and Hemorrhagic Diseases, IRCCS Humanitas Research Hospital Milan, and Yesim Dargaud, head of the Clinical Haemostasis Unit at Lyon University Hospitals and the coordinator of the French reference centre for haemophilia to discuss the best practices for managing surgery in patients with haemophilia. 🎥 The full module is available on the EAHAD Academy: https://academy.eahad.org/eahad/2024/module-131-surgery-in-patients-with-haemophilia/4145760
This episode features Sébastien Lobet who is currently a Physiotherapist and Researcher at the Haemostasis and Thrombosis Unit at the Cliniques Universitaires Saint-Luc at Université Catholique de Louvain in Brussels, Belgium. He was also chair of the EAHAD Physiotherapists Committee.
Paul Mclaughlin will interview him about his recent paper titled "ACTIVLIM-Hemo: A new self-reported, unidimensional and linear measure of activity limitations in persons with haemophilia".
📰 Read the full article on the Haemophilia Journal: https://onlinelibrary.wiley.com/doi/full/10.1111/hae.14705
🎥 Watch the episode on the EAHAD Academy: https://academy.eahad.org/eahad/2024/meet-the-author-sbastien-lobet/4142499
Welcome to our podcast series, today we interview Prof. Thierry VandenDriessche to discuss how to enhance the efficacy and safety of gene therapy for haemophilia A and B. Despite achieving multiyear therapeutic levels of factor VIII and factor IX in patients, challenges remain. Variability in expression, gradual decline of factor VIII levels, and frequent incidence of transaminitis present ongoing hurdles.
In this episode, we delve into these challenges and discuss strategies to overcome them, with a focus on the use of adeno-associated viral vectors (AAV). We also examine the advancements and limitations of integrating vector systems, such as lentiviral vectors and CRISPR-based gene editing, in preclinical studies. These strategies aim to maintain sustained clotting factor expression, even amidst target cell division.
🎥 Watch the full module on the EAHAD Academy: https://academy.eahad.org/eahad/2024/module-12-how-can-we-improve-the-efficacy-and-saf/419034
Dive deep into understanding the Clinical Experience in Haemophilia Gene Therapy with Johnny Mahlangu.
🎥 Watch the full module on the EAHAD Academy: https://academy.eahad.org/eahad/2024/module-11-clinical-experience-in-haemophilia-gene/417335
This new episode on the Basic Science of Haemophilia Gene Therapy with Paul Batty introduces the science underlying this new therapy. Itprovides an overview of different gene therapy approaches, focussing on adeno-associated viral (AAV) vectors that are used for the treatment of haemophilia.
🎥 Watch the full module on the EAHAD Academy: https://academy.eahad.org/eahad/2024/module-10-basic-science-of-haemophilia-gene-thera/411461
In this episode, we explore the complexities of managing Von Willebrand Disease in women during childbirth. This in-depth discussion goes beyond the basics, addressing the unique challenges faced by women and highlighting the essential considerations for providing optimal care. This presentation refers to all people with the ability to menstruate.
🎥 Watch the full module on the EAHAD Academy: https://academy.eahad.org/eahad/2024/module-9-peripartum-management-of-women-with-von/408873
This episode features Megan Kennedy talking with Paula Loughnane, a member of the EAHAD Physiotherapists Committee, about her recent research on the physical well-being of adults with moderate and severe haemophilia. The study delves into the realms of physical activity, fitness, and cardiometabolic risks among this population.
📰 Read the full article on the Haemophilia Journal: https://onlinelibrary.wiley.com/doi/full/10.1111/hae.14653
🎥 Watch the episode on the EAHAD Academy: https://academy.eahad.org/eahad/2024/meet-the-author-megan-kennedy/409870
This time, we're thrilled to host Valérie-Anne Chantrain, delving into her groundbreaking article "Pain interferes with daily activities, emotions and sleep in adults with severe, moderate and mild haemophilia: a national cross-sectional survey".
Pain poses a significant challenge for individuals with haemophilia, impacting daily life, emotions, and even sleep. Valérie-Anne's study is an exploration within a biopsychosocial framework, shedding light on the prevalence and interference of pain in severe, moderate, and mild haemophilia. Surveying 185 respondents, the findings are eye-opening. A staggering 67% reported pain, with varying degrees across severity levels. Beyond statistics, the study unravels the intricate relationships between pain severity, interference, and health-related quality of life (HR-QoL).
📰 Read the full article on the Haemophilia Journal: https://onlinelibrary.wiley.com/doi/abs/10.1111/hae.14747 🎥 Watch the episode on the EAHAD Academy: https://academy.eahad.org/eahad/2023/meet-the-author-valrie-anne-chantrain/404929
Welcome to the EAHAD Podcast for the "Meet the Author" series. Today, we are joined by Flora van Leeuwen, author of the article "Monitoring recovery of joints after bleeding: physical examination and ultrasound are complementary". In this episode, Magnus Aspdahl, a member of the EAHAD Physiotherapists Committee, interviews Flora about her insights and findings.
📰 Read the full article on the Haemophilia Journal: https://onlinelibrary.wiley.com/doi/full/10.1111/hae.14791
🎥 Watch the episode on the EAHAD Academy: https://academy.eahad.org/eahad/2023/meet-the-author-flora-van-leeuwen/402756
In this E-Learning podcast, you will have the opportunity to learn about the prophylactic management of patients with von Willebrand disease (VWD), a common inherited bleeding disorder. The module is presented by two experts in the field: Prof. Roberta Gualtierotti and Prof. Flora Peyvandi.
🎥 Watch the full module on the EAHAD Academy: https://academy.eahad.org/eahad/2023/module-5-prophylactic-management-of-patients-with/393918
Dive deep into understanding Menstrual Problems and Inherited Bleeding Disorders with Karin van Galen on behalf of the EAHAD Women and Girls with Bleeding Disorders Working Group. 🎥 Watch the full module on the EAHAD Academy: https://academy.eahad.org/eahad/2023/module-7-menstrual-problems-and-inherited-bleedin/405219
Gastrointestinal bleeding presents a recurrent and intricate challenge in patients with Von Willebrand Disease (VWD). In this podcast, we explore the standard of care protocols, and typical patient scenarios, with a special focus on angiodysplasia. The module is presented by Prof. Sophie Susen.
🎥 Watch the full module on the EAHAD Academy: https://academy.eahad.org/eahad/2023/module-6-module-6-how-to-manage-gastrointestinal/401306
In this podcast, we delve into the remarkable 50-year evolution of haemophilia care, as chronicled in Professor Mannucci's groundbreaking article published in JTH. We'll travel through time, exploring the distant and recent past, lingering in the present, and casting our eyes toward the future of hemophilia treatment.
Our journey begins by turning back the clock to Professor Mannucci's pivotal encounter with Judith Pool and her groundbreaking discovery of the cryoprecipitation principle, setting the stage for incredible developments in haemophilia care. Don't miss this captivating exploration of the past, present, and future of haemophilia care.
Join us on this extraordinary expedition.
🎥 Watch the full module on the EAHAD Academy: https://academy.eahad.org/eahad/2023/e-learning-insights/405860
E-learning Module 4 on von Willebrand disease with Luciano Baronciani and Omid Seidizadeh focuses on the diagnosis of this complex bleeding disorder. The module provides an update on the current literature regarding von Willebrand disease and covers various aspects of diagnosis, including laboratory testing, and differential diagnosis. Through this module, learners will gain a better understanding of the challenges involved in diagnosing von Willebrand disease and the importance of accurate diagnosis for the effective management of patients with this disorder.
Welcome to E-Learning module 3 on Factor VIII (FVIII) inhibitors during non-replacement therapy. Our speakers Jan Astermark And Christoph Königs will be sharing valuable insights into the pathophysiology of FVIII inhibitors, factors contributing to their development, and strategies to manage patients with FVIII inhibitors during non-replacement therapy.
Learn more and watch the full module on EAHAD Academy: https://academy.eahad.org/eahad/2023/module-3-fviii-inhibitors-during-non-replacemen/385137