Transitional Care to Medicare With Dr. Diane Nugent M.D.
Featuring: Dr. Diane Nugent M.D.Description: Understanding Medicare enrollment is crucial for people with bleeding disorders. Learn about the registration process, the different Medicare parts, and how to…
Patient Assistance Programs Listing Updated!
HANDI would like to remind the community that the online Patient Assistance Programs (PAPs) listing has been updated. The PAPs resource page encompasses programs designed to assist individuals and families…
Jasmine Cade
NBDF Mourns the Loss of Dr. Marion Koerper
The National Bleeding Disorders Foundation (NBDF) is deeply saddened to announce the passing of Dr. Marion Koerper on Wednesday, December 18, 2024, following a courageous battle with glioblastoma. A pioneering figure in…
FDA Approves Subcutaneous Therapy for Hemophilia Patients with Inhibitors
The U.S. Food and Drug Administration (FDA) has approved Alhemo (concizumab-mtci) for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adult and pediatric patients 12 years of age and older with hemophilia A with factor…
Global Experts Create Blueprint for Future VWD Research
In a significant advancement for von Willebrand Disease (VWD) research and treatment, an international team of experts, including patients, clinicians, and researchers, has developed the first-ever core outcome set (COS) for VWD clinical trials. The…
Utilizing a community registry to analyze pain limitations in persons with IBDs
This analysis evaluated relationships between pain limitations and 1) family history of IBD, social determinants, depression/anxiety scores and 2) use of marijuana, opioids and other medications, anxiety, and depression. The majority of CVR…
Gene therapy preferences and informed decision-making: Results from a NHF CVR survey (External Auth)
The aim of this study was to evaluate preferences and variables which influence decision-making related to gene therapy and other novel haemophilia therapies. Haemophilia Treatment Centers and patient advocacy groups must be able to educate persons…
Relationship between Perceived Social Support, Mental Health, Activity, and Chronic Pain in Persons with Inheritable Bleeding Disorders
The aim of this analysis was to describe the relationship between self-reported mental health diagnosis, history of mental health treatment, participation in physical activity, chronic pain, and social support. Persons with inheritable bleeding…
Development of a haemophilia A gene therapy shared decision-making tool for clinicians. External Researchers
Clinicians at US Hemophilia Treatment Centers completed semi-structured interviews about their experience with shared decision-making and provided feedback on a clinician shared decision-making tool prototype. These data highlight the need for…