2025 U.S. NATIONAL SEVERE VWD CONFERENCE
JULY 18-21, 2025
WEST PALM BEACH MARRIOTT • FLORIDA
Welcome from the Executive Director
Welcome to the VWD Connect Foundation website. If you have severe von Willebrand disease (sVWD), you have come home. If you are interested in learning more about this ultrarare genetic bleeding disorder, I am grateful your search brought you here.
What It Means To Have Severe Von Willebrand Disease: Von Willebrand disease is a lifelong hereditary bleeding disorder where blood does not clot well. People with the disease have either low levels of von Willebrand Factor, a protein necessary to form a blood clot, or their von Willebrand Factor does not work properly.
-
Most people are born with the disease, having inherited it from one or both parents. Sometimes warning signs such as heavy bleeding from a fall or nosebleed may not show up for a year or more.
-
There is currently no cure for von Willebrand disease. VWD Connect is dedicated to supporting connections between patients, clinicians, researchers, industry partners and other key stakeholders to encourage discovery and bring forth a cure.
-
Many sVWD patients experience unpredictable, spontaneous bleeds that can at times be life-threatening. These can manifest as nosebleeds, easy bruising, heavy menstrual bleeding, and longer than normal bleeding after injury, surgery, dental work, or childbirth. All locations of the body can experience bleeds including joints, GI tract and brain.
EVENTS
Since 2017, our annual conference has brought people of all ages with severe VWD together to share insights, experiences and perspectives while learning about exceptional medical and support resources.
Read more about past events and see what we have coming up!
RESOURCES
Our robust resource library features links to our monthly newsletters, video presentations, helpful apps and articles, friends of the Foundation, and more.
Take a look!
WHO WE ARE
VCF is the only Foundation in the United States dedicated to serving the severe von Willebrand disease community.
Learn about the people who make this Foundation possible, including our dedicated Board of Directors and impressive International Medical and Scientific Advisory Board.
RESEARCH
Leveraging the power of our membership and network of medical professionals, we are dedicated to supporting and contributing to research towards better treatments, and ultimately, a cure. Click to learn more about our sponsored projects, and how you can be involved.
GET INVOLVED
Because severe von Willebrand disease is an ultrarare disease state, few know how deeply it affects every facet of the lives of those who have it.
We work to connect patients with top medical experts and care providers, as well as with each other. Become a member, or donate today.
SPOTLIGHTS
Get to know our community by reading about some very special people! Here you will find Spotlight interviews with Foundation Members from all walks of life, including patients and families, Staff and Faculty. Read about their lives and how living and/or working with severe VWD has impacted them as individuals.