This educational resource for patients with von Willebrand disease (VWD) is available as an online PDF from the National Hemophilia Foundation. It provides general information about VWD and its types/subtypes; a 9-item VWD "essentials" checklist, with explanations; a 5-item checklist of information that patients should be prepared to share with their hematologists or with hemophilia treatment center staff; key symptom and management pointers, both in general and specific to male vs female patients; and several links to additional sources of information and support.
Newly updated for 2022 is this excellent patient-education brochure on mild hemophilia, available as an online PDF from the Canadian Hemophilia Society. Written by a team of advanced practitioners from centers across Canada, it provides a checklist on mild hemophilia, general information about the condition, tips on how to recognize bleeds, information about treatment options and inhibitor development, discussion focused on mild hemophilia in women and girls, healthy lifestyle advice for people with hemophilia, and a list of additional references and resources.
HemAware is an online magazine from the National Hemophilia Foundation that focuses on bleeding disorders, with separate links to information about specific disorders (hemophilia A and B, von Willebrand disease, hepatitis C, HIV, and several rare blood disorders) and health considerations for women with bleeding disorders. Research and treatment advances are highlighted; and supportive care tips on pain management, fitness, and nutrition are provided.
Explore 11 full-length video presentations from the Canadian Hemophilia Society's Coderouge 2021 conference, held virtually in September and promoted by the CHS as "the third Canadian conference on bleeding disorders in women." The sessions on hemophilia and von Willebrand disease kick off with a presentation by hematologist Leonard A. Valentino, MD, President and CEO of the National Hemophilia Foundation and the founder and former Director of Rush University's Hemophilia and Thrombocytopenia Center, in Chicago.
In this short video from the American Society of Hematology (ASH), Veronica H. Flood, MD, provides a clinical snapshot of von Willebrand Disease (VWD) and the goals of the 2021 VWD clinical practice guidelines developed by ASH together with the International Society of Thrombosis and Haemostasis, Inc., the National Hemophilia Foundation, and the World Federation of Hemophilia. Dr. Flood is Clinical Co-chair of the panel that developed these guidelines.
The Centers for Disease Control and Prevention's Division of Blood Disorders funds Community Counts, a public health monitoring program that partners with the American Thrombosis and Hemostasis Network and the US Hemophilia Treatment Center Network. The purpose of Community Counts is to gather and share information about morbidity and mortality related to patients with hemophilia (and von Willebrand disease) who receive care in federally funded HTCs (designated Hemophilia Treatment Centers) in the US. A printable fact sheet for healthcare providers describes Community Counts, the information it collects, and eligibility for participation in the program.
This document, offered by the National Hemophilia Foundation (NHF), provides updated recommendations (as of March 2021) from MASAC (NHF's Medical and Scientific Advisory Council) for treating bleeding in individuals with VWD. The recommendations are adapted from the American Society of Hematology, International Society on Thrombosis and Haemostasis, National Hemophilia Foundation, and World Federation of Hemophilia 2021 VWD guidelines.
This document, offered by the National Hemophilia Foundation (NHF), provides updated recommendations (as of March 2021) from MASAC (NHF's Medical and Scientific Advisory Council) for the diagnosis and management of women with bleeding disorders during pregnancy, labor and delivery, and in the postpartum period. Information is also provided regarding genetic counseling for adolescent females and women who may be carriers of hemophilia A or B. The goal is to minimize the risk of bleeding-related complications and facilitate early diagnosis of affected infants, following a multidisciplinary approach.
Several new etiological factors for development of acquired hemophilia A and acquired von Willebrand syndrome have been identified in recent years. For hemophilia A these include SARS-CoV2 infection and treatment with immune checkpoint inhibitors or DPP-4 inhibitors. Acquired von Willebrand syndrome has be linked to use of left ventricular assist devices. The author reviews current data on the etiology, diagnosis, and treatment of these 2 acquired bleeding disorders.
This review, last updated on October 13, 2021, discusses perioperative management and treatment of bleeding for patients with hemophilia A and B, based on the World Federation of Hemophilia Guideline updated in 2020.
The National Hemophilia Foundation’s Nursing Working Group provides several useful PowerPoint presentations on its website. “The Basics of Hemophilia” provides a good overview of the etiology and pathophysiology of this blood disorder, along with types of bleeds, treatment options and complications, nursing considerations, and the role of hemophilia treatment centers.
National Hemophilia Foundation (NHF) President and CEO Leonard Valentino, MD, discusses the role that von Willebrand Factor may play in severe cases of COVID-19, in this succinct post on the NHF website. Links to recent academic articles and media reports on this topic are provided.
The authors of this January 2021 article evaluate specific obstacles to early diagnosis and treatment of VWD. They note that early diagnosis of mild cases and cases of qualitative von Willebrand factor defects may be especially difficult but emphasize that “bleeding history still represents the crucial key in order to induce an early diagnosis and consequent optimal treatment” and the use of bleeding assessment tools, or BATs, “helps to standardize bleeding history collection and to quantify bleeding frequency and severity.”
This site from Verywell Health, a partner of the Cleveland Clinic, highlights physical, hormonal, malignant, and pathological causes of vaginal bleeding, including von Willebrand disease (VWD). Information about VWD diagnosis and treatment is outlined.
This multicenter team of pediatric researchers provides a comprehensive overview of novel molecular approaches to hemophilia care, focusing on several gene therapies and non-replacement therapies. Proclaiming that “a new revolution in hemophilia treatment is now in full gear,” they summarize the available data on these approaches, their advantages and limitations, and the potential impact on hemophilia management. Excellent explanatory figures make this article reader-friendly.
Hemophilia News Today offers a welcoming space for hemophilia carriers and patients—as well as their families, caregivers, and healthcare providers—to share information and learn more about this rare blood disorder.
The nonprofit Nemours Foundation in Jacksonville, Florida, was founded by Alfred I du Pont in 1936. Dedicated to improving children’s health, it operates Nemours Children's Clinics in Delaware, Florida, Pennsylvania and New Jersey. The Foundation’s KidsHealth website provides a TeensHealth page with basic information about the causes, diagnosis, and treatment of von Willebrand disease, as well as tips on symptom management and communication with medical professionals.
Founded in 1991, the Coalition for Hemophilia B offers access to a broad range of workshops, educational programs, and resources ranging from research news to QoL advice for patients with hemophilia B and their caregivers. The organization’s online Hemophilia B News is published quarterly.
This continuing education course for healthcare professionals is divided into four modules, and covers the diagnosis of hemophilia, appropriate treatment options for bleeding episodes, and management of complications and their associated psychosocial issues.
This paper provides guidance on the care of girls and adolescents with bleeding disorders who have heavy menstrual bleeding. It discusses screening tools; laboratory evaluation; imaging recommendations; medical, hormonal, and nonhormonal management; use of NSAIDs; transfusion; intrauterine procedures and devices; management of ovarian cysts; and support of reproductive health.
This resource for patients and healthcare providers provides a wealth of information, encompassing diagnosis and treatment, along with printable fact sheets and brochures; connections to treatment centers and clinical trials; descriptions of current research projects and access to published scientific research; professional webinars and guidelines for diagnosis, treatment, and management; and, especially for women with VWD, tips for pregnancy and childbirth.
The World Federation of Hemophilia (WFH) guidelines were last updated in 2012, as the 2nd edition of the guidelines. Learn more about important advances in several aspects of hemophilia management since then in the current 3rd edition of the WFH guidelines, published in August 2020.
The NHLBI website provides comprehensive educational information for patients with bleeding disorders including hemophilia, von Willebrand disease, coagulation disorders, blood clotting disorders, and clotting factor deficiencies.
The National Hemophilia Foundation website provides background information on hemophilia, von Willebrand disease and other factor deficiencies, and rare platelet disorders, as well as disease-specific best-practices treatment recommendations and management guidelines for healthcare professionals.
The CDC funds a national network of hemophilia treatment centers, or HTCs. This searchable directory enables users to find HTCs and regional HTC coordinators. Mailing labels can be printed and Treatment Center Staff can be emailed directly from the site.
This case-based article, included in the 2019 American Society of Hematology (ASH) educational program, teaches clinicians when to suspect an acquired coagulopathy in the acute-care setting, describes current specialized treatments, and highlights other acquired conditions with similar presentations.