The Bleeding Disorders Association of South Carolina’s “VWD PROGRAM” exists to support and empower individuals and their families who are diagnosed or affected by von Willebrand disease within their families. Our goal is to help:
New VWD Guidelines for the diagnosis and management of von Willebrand disease were released in January 2021. These updated guidelines are the result of a collaborative effort between the American Society of Hematology (ASH), the International Society on Thrombosis and Hemostatsis (ISTH), the National Hemophilia Foundation (NHF), and the World Federation for Hemophilia (WFH). The following one-page snapshots offer a summary of these guidelines and will provide you with the most important and up-to-date information.
Click here to read the updated guidelines in full.
Questions? Reach out to handi@hemophilia.org.
Summary of the guidelines on the diagnosis of von Willebrand Disease (VWD).
Summary of the guidelines on the management of von Willebrand Disease (VWD).
With new families being diagnosed and many approved medications, emerging treatments, and gene therapies in clinical trials, HFA addresses the need for patient and caretaker education through Learning Central. Learning Central offers online learning modules, accessible via computer, tablet, and mobile device, using an integrated learning management system (LMS).
This LMS provides adult learners with knowledge in an easily-accessible environment and measures learning success and other metrics. Learning is broken into small, but dense, learning pieces so users can learn a lot in just a few minutes. The instructional design is story-based and predictable to engage the learner in continued participation. It is also learner-decision-based: The learners may choose what they wish to learn about and in what order. In some cases, they also have a choice regarding the complexity of the material (e.g., choosing basic or scientific information).
Link: https://www.hfalearning.org/login/index.php
Back to School Resources from HFA
Sending your child with Von Willebrand Disease to school can often be a scary and challenging time. Luckily there are resources available for you to help ease the transition. HFA has put together some educational videos for you to share with your school’s teachers, nurses, and staff.
Link: https://www.hemophiliafed.org/resource/back-to-school/
The Center for Disease Control and Prevention provides us with general information related to Von Willebrand Disease on this concise webpage. The CDC is generally considered a credible resource for information on disease states. Visit their website for more information on VWD, the types of VWD, signs and symptoms of VWD, causes, diagnosis and treatment.
NOW is a national educational conference for individuals and families who are living with this chronic disorder. It is a forum to learn about new medical advances, to gain tools that can help you better manage von Willebrand Disease (VWD), and to share with others facing the same or similar challenges. We will bring expert healthcare professionals who can best address the issues unique to VWD. With funding by a grant from CSL Behring, the AZBD is excited to organize this national conference focused specifically on von Willebrand Disease.
VWD Connect Foundation Inc., (VCF) is a non-profit organization founded in Florida on August 1, 2017. VWD Connect has been established to serve the bleeding disorder community, focusing on severe Von Willebrand Disease. The Foundation provides education and connection for patients and families, and supports research which will benefit the Von Willebrand Disease community.
This website is a resource to support people who suspect that they may have von Willebrand disease (VWD) and the physicians who manage them. VWD is a bleeding disorder, and the VWDtest.com online bleeding assessment tool can be used to detect whether a bleeding disorder may be present.
The additional content and resources of VWDtest.com are intended to support identification of VWD symptoms. VWD is usually diagnosed in a specialist , which would also assist in the identification of appropriate treatments. , which would also assist in the identification of appropriate treatments.
Link: https://vwdtest.com/
Comprehensive Health Education Services
Comprehensive Health Education Services (CHES) was founded in 2009 by three friends, all with hands-on experience with chronic health conditions.
Seeing a void in patient education, the founders decided to create CHES as a resource to provide individuals with chronic medical conditions with the support that allows them to assert their independence and the knowledge to more fully engage in their treatment.
Over the years CHES has grown in scope and reach, attracting national and international attention for our unceasing work on behalf of our ever-widening community. With the important help of our funders, CHES offers those in need with a wide range of resources, including on-site patient programming, education, and the latest information on research and treatment.
CHES is currently owned and managed by Janet Brewer and Eric Lowe, both of whom live with chronic conditions, their own or those of family members.
Link: https://ches.education/
Bleeding Disorders Association of South Carolina is a 501(c)3 non-profit organization and a chapter of the National Bleeding Disorders Foundation and a member organization of Hemophilia Federation of America.
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