TOP 3 SEARCHES
FILTER
CATEGORY
Para hacer una búsqueda en los recursos electrónicos haga clic aquí.
LANGUAGE
También disponible en:
Search Results
Susan Cutter, LCSW, MSW, & MPA is a social worker at the Penn Comprehensive Hemophilia and Thrombosis Center (PCHP). PCHP serves adults with inherited bleeding and clotting disorders. Ms. Cutter has worked in the inherited bleeding disorders field for 32 years. She is also the Chair of the WFH Psychosocial Committee.
Dr. Johnsen is a physician scientist with expertise in classical (benign) hematology. She is researcher at Bloodworks Research Institute, an Associate Professor of Medicine at the University of Washington, and sees patients in the Washington Center for Bleeding Disorders (WACBD). Dr. Johnsen studies the genetics and biology of clotting factors and blood groups (blood types), with emphasis on coagulation factor VIII (FVIII), factor IX (FIX), and von Willebrand factor (VWF), and clinically relevant blood group genes, particularly in the ABO and Rh systems. Dr. Johnsen is further working to better understand the molecular basis of how inherited bleeding disorders uniquely impact females, particularly in hemophilia and von Willebrand disease.
Shannon L. Meeks, MD is a pediatric hematologist at the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta and Professor of Pediatrics and the Mitchell Chair in Hemostasis at Emory University. She obtained a Bachelor of Science in Mathematics from Duke University. After earning her medical degree at the University of Mississippi in Jackson, she served her residency in pediatrics at the University of Virginia, Charlottesville, and pursued a fellowship in pediatric hematology/oncology at Emory University. Dr. Meeks has a basic, translational, and clinical research interest in hemophilia and inhibitors. Her current projects focus on understanding the early stages of the immune response to factor VIII and understanding how changing patterns of factor VIII exposure in the setting of non-factor replacement therapies impact the immune response to factor VIII . She currently serves as the President of the Hemostasis and Thrombosis Research Society and is a member of the Medical and Scientific Advisory Council (MASAC) of the National Hemophilia Foundation.
My name is Gernot Radlingmayr. I live in Vienna, Austria. I've studied architecture and I am currently working for the Austrian Railways. In my free time I like to play guitar, do some sport and meditation in a Zen tradition. My partner is a women with severe Factor VII deficiency. Through her I learned more about bleeding disorders in general and especially in women and I got involved in the activities of the Austrian Hemophilia Society. On August 1st 2023 our daughter Ina was born, our first child. I gained experience in supporting a partner with Factor VII deficiency through pregnancy and childbirth.
Mr. Masood Fareed Malik is a Person with Hemophilia and a well-known community activist in Pakistan. He has been working very closely with “Hemophilia Foundation® - Pakistan [HFP] and its Chapters since 2000. He is a young professional and an entrepreneur managing his business. Previously, he has worked for 10 years as Social Mobilization Office at the “Joint United Nations Programme on HIV/AIDS [UNAIDS]”. Mr. Malik is currently serving voluntarily as “Advisor”. In his previous voluntary role, he has served as “President” of HFP and represented Hemophilia Community at many national, regional and international platforms. Mr. Malik has been a tireless advocate in achieving treatment for all those living with bleeding disorders in Pakistan. He strongly believes in the greater involvement of community members at all decision-making levels. He has the capacity to handle cross-cultural sensitivity concerning hemophilia and aims to make use of his experience and abilities to provide support to community members especially the under privileged. Malik has a Master’s degree in Business Administration [MBA] among other qualifications.
Miguel Escobar is tenured Professor of Internal Medicine and Pediatrics at the University of Texas Health Science Center, MD Anderson Cancer Center and the McGovern Medical School in Houston, Texas. He is also the Director of the Gulf States Hemophilia and Thrombophilia Center, the Clinical Research Center at the University and the Medication, Therapy and Wellness Center at the Memorial Hermann Hospital in Houston. Dr Escobar received his MD from the Universidad Libre in Cali, Colombia and did his residency in Internal Medicine at the University of Connecticut and fellowship in hematology/oncology at the University of North Carolina at Chapel Hill, USA. Dr Escobar has been involved in many clinical studies, resulting in a range of publications and is a member of several professional organisations. He is a member of the World Federation of Hemophilia Board of Directors and Chair of the Scientific and Standardization Subcommittee on FVIII/FIX & rare coagulation disorders for the ISTH. His main research interest is in haemophilia, congenital and acquired inhibitors and other coagulation deficiencies.
Patrick James Lynch is a filmmaker, content producer, and the Founder/CEO of Believe Limited. Producing credits include the films Bombardier Blood (EP: Alex Borstein), My Beautiful Stutter (EP: Paul Rudd), sometimes, i think about dying (Sundance Film Festival), Let’s Talk (with Mental Health Matters Too), and Elsewhere (Winner: HRIFF Best Picture); the web series Stop The Bleeding! (12 seasons and counting); podcasts on hemophilia, sickle cell disease, thalassemia, pain, clinical research, and more through BloodStream Media, and he’s produced event programs like Speak Up, Speak Out: Cystinosis and Me; Urea Cycle Disorder: Undefined; Breaking Through: Hemophilia The Musical, the Teen Impact Awards, and TheScienceFair.org. Founding Board President of Entertainment 2 Affect Change (501c3). Awards: Hemophilia Federation of America Health & Wellness (2013), National Hemophilia Foundation Meritorious Service (2014), NORD Rare Impact (2020). World Federation of Hemophilia Congress Speaker (2016, 2018, 2022). Media coverage: BBC, Buzzfeed, Deadline, Fox News, HuffPo, Variety, VICE, and beyond. Patrick lives with severe hemophilia A and dedicates his work in rare disease to the memory of his late brother, Adam. Catch Patrick multiples times a month on BloodStream Podcast.
Dr. Nathan Connell is Chief of Medicine at Brigham and Women’s Faulkner Hospital, Vice Chair of Medicine at Brigham and Women’s Hospital, Associate Director of the Boston Hemophilia Center, and Associate Professor of Medicine at Harvard Medical School. His clinical practice focuses on inherited bleeding disorders and he researches cost-effective strategies for the diagnosis and management of hematologic diseases. A graduate of Cornell University, the University of Miami School of Medicine, and the Harvard School of Public Health, he completed an internal medicine residency and a hematology/oncology fellowship at Brown University. In addition to his work defining the field of systems-based hematology, he co-chaired the ASH ISTH NHF WFH Guidelines on the Diagnosis and Management of von Willebrand disease.
Dawn has been a leader in the bleeding disorders community for many years. As a parent of a son with hemophilia, she founded the Rocky Mountain Hemophilia & Bleeding Disorders Association in Bozeman, Montana, served as its Executive Director, and began their Family Camp. After moving to Pittsburgh, Pennsylvania, she served as a board member for the Hemophilia Center of Western Pennsylvania for six years and then as Executive Director of the Western Pennsylvania Chapter. She has been with the National Hemophilia Foundation for 14 years and serves as Chief Operating Officer. Dawn serves on the Board of Directors for the World Federation of Hemophilia and World Federation of Hemophilia USA. Dawn proudly chairs the Women and Girls with Bleeding Disorders and the Hemophilia Organization Twin Committees for WFH. She holds a Bachelor of Science from Montana State University in Bozeman.