Patient Notification System Brochure
Learn about the Plasma Proteins and Therapeutics Patient Notification System, and how to sign up to receive confidential notifications of medication withdrawals or recalls that may be relevant to you!

Clinical Trial Facts for People With Blood Diseases & Disorders Fact Sheet
Check out this fact sheet from the National Heart Lung and Blood Institute to learn about the four phases of clinical trials and questions you may want to ask if you are eligible to participate.

5-4-3-2-1 Grounding Technique
Most of bleeding disorder education centers around taking care of the physical body. Its important that our mental wellbeing is not over-looked. Cultivating a strong mind-body connection can help with physical and mental wellness. Use this two-page handout to learn a simple but effective grounding technique using the five senses, as well as explore other ways to incorporate sensory grounding into your daily life.

Anxiety Disorders – Information and Tools to Help
Everyone experiences anxiety- and managing a bleeding disorder can certainly make things seem even more daunting. Click on this article from the National Alliance on Mental Illness to learn practical coping skills and grounding techniques you can implement right now to help calm overwhelming feelings.

Depression – Information and Tools to Help
This document reviews the causes, symptoms, and treatment of depression. You will also find tools to help break the cycle of depression, such as social support and behavioral activation techniques.

Making the Infusion Process Easier
This infographic from the Hemophilia Federation of America offers tips and advice for families with children who need to infuse. You are not alone- read to learn about ways other families with bleeding disorders have learned to make infusing a little more manageable.

Mental Health Resource Page
A compilation of organizations to reach out to when you need help.

Pokes and Pain: At a Glance
Compiled from Child Life Council’s Comfort Tips & Tricks Handout, this PDF from the Hemophilia Federation of America tackles signs of pain, distraction techniques, and suggests comfortable positions for infusing for infants through adolescents.

Tips and Tricks for Smoother Infusions
This infographic gives very practical tips for handling your own infusion or that of a family member. Learn how to prep the vein, use a tourniquet, check your angles, and more.

Fear of Needles
Needle phobia is a common issue for those who have to infusion medication. Find some ideas that may help and a real life example.

Blood Sisterhood App
This robust app is free and has been designed specifically for women with bleeding disorders. It has loads of features to help women log symptoms, menstrual cycles, share information with providers, and record treatments. Available for iPhone and Android it will provide women and girls significant peace of mind and reassuring way to manage their menstrual bleeds.

A Sample Travel Letter
Don’t leave home without this important communication (or a version of it) created by Steps for Living. When traveling with a clotting factor, a letter explaining a brief description of your condition and the need for medication is a must. Here is a sample worth tailoring for your specific needs.

Playing it Safe
Written by experts in the field of bleeding disorders this book is dedicated to encouraging and coaching healthy activities. For those with Type 3/Severe Von Willebrand Disease it will give you courage to step out and try new things and give you confidence to support your dreams for physical fitness. It will give parents hope and offer tips for providing safety for kids growing up with VWD; encouraging the best for motion and agility.

Family Emergency Checklist
The CDC has a preparedness checklist for families during times of disaster. For those with bleeding disorders it is especially critical to have another layer of plans in place. Here is your guide for doing so effectively and with confidence.

100 Questions & Answers About Von Willebrand Disease
Originally released in 2008 this primer on Von Willebrand Disease still has staying power. Written from both patient’s and doctor’s views it is a practical yet easy to understand overview, even if it does not go into great detail about many issues confronted by those with Type3/Severe Von Willebrand Disease. Available on Amazon.

Tips To Take To School
Jeanette Cesta, Founder of VWD Connect Foundation knows a bit about VWD. She is an educator, trainer and has raised three children with the disease. This read for parents is an insightful way to help parents and kids with VWD muscle through the realities of today’s classroom.

Common Terms for sVWD
A handy cheat sheet of (perhaps not so) common terms that anyone with severe VWD needs to know. Prepared by Tung Wynn, MD, of the University of Florida and presented at our 2022 National Conference. Please click here to watch Dr. Wynn’s session from the conference giving a more in-depth explanation of the terms mentioned!

Guidelines on the Diagnosis of VWD
Published in a January 2021 issue of Blood Advances, this document represents a collaboration of knowledge from experts in the field of bleeding disorders. These clinical guidelines represent the most up-to-date consensus on diagnosing VWD.

Guidelines on the Management of VWD
Published alongside the diagnosis guidelines above, this document outlines the most up-to-date recommendations for the management of VWD.

sVWD Registry Information Sheet
Help us spread the word! This conveniently printable PDF has all the necessary information about the VWD Connect sponsored study, The Severe VWD Patient Registry: A Longitudinal Natural History and Patient Outcomes Study. Learn more about the study protocol, the development team, our Principal Investigators, and most importantly- how to join the cause and help us Connect for the Cure.