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.