Synonyms: Hereditary von Willebrand disease
A rare inherited bleeding disorder characterized by defective platelet adhesion and secondary coagulation defect that manifests as abnormal bleeding of variable severity occurring either spontaneously or in association with an invasive procedure. Three main subtypes are defined based on the type of von Willebrand factor defect: partial (type 1) or total (type 3) deficiency and qualitative/functional anomalies (type 2).
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview. Reference: Access aggregated data from Orphanet at Orphadata. Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version October 2024
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Von Willebrand disease?
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Advocacy Organizations
Accessia Health
Accessia Health is a national nonprofit 501(c)(3) organization that provides programs and services to individuals of all ages who are living with a rare or chronic health condition. With 80+ disease programs, we offer case management, education, and financial assistance for health insurance premiums, medication copayments, travel, and other medical expenses. We’re focused on addressing unmet needs in healthcare, including paying for important expenses such as diagnostic tests, durable medical equipment, and more. Our holistic, inclusive, outcomes focused approach offers patients comprehensive support throughout their healthcare journey.
Bleeding Disorders Alliance Illinois
The Bleeding Disorders Alliance Illinois exists to improve the quality of life for the inherited bleeding disorders community by supporting individuals and their families with unbiased information and resources which allows them to live healthy and active lives.
Care-for-Rare America Inc
To establish a global alliance in order to identify the genetic causes of rare diseases and develop effective treatments, following a three-stage approach: recognize, understand, cure.
Hemophilia Foundation of Southern California
“Improving the quality of life and building community for those living with inherited bleeding disorders in Southern California.”
Hemostasis and Thrombosis Center of Nevada
The Hemostasis & Thrombosis Center of Nevada (HTCNV) is Nevada's only federally designated hemophilia treatment center (HTC). We provide care for benign inherited blood disorders specifically bleeding disorders, thrombotic disorders and sickle cell disease. Our mission is to provide access to compassion evidence based quality care to all patients in Nevada regardless of their ability to pay.
National Center of Hematology and Blood Transfusion
Treatment of patients with blood diseases,scientific-research works
National Hemophilia Foundation
The National Hemophilia Foundation (NHF) is dedicated to finding cures for inheritable blood disorders and to addressing and preventing the complications of these disorders through research, education, and advocacy enabling people and families to thrive.
Save One Life, Inc
Empowering individuals and families affected by bleeding disorders in developing countries through direct financial assistance and access to medical treatment.
Syndromes Without A Name (SWAN) Australia
Provide information, support and advocacy to families caring for a child with an undiagnosed or rare genetic condition.
Youth And Women for Opportunities Uganda-YWOU
Our mission supports Rare, orphan and undiagnosed diseases diagnosis, care and treatment, education, awareness and empowering health care professionals and patients care takers of rare, orphan and undiagnosed diseases arena in Uganda, build capacity and bridge lack of clinical knowledge and experience and provide search/quest for diagnostic laboratories, I advocate for changes in laws, practices
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Clinical Trials
For a list of clinical trials in this disease area, please click here.