VWD Connect Foundation’s primary aim is to improve the lives of patients and families living with severe von Willebrand disease (sVWD).  Access to a knowledgeable medical team plays a critical role in facing these challenges. Unfortunately, sVWD patients are not well described in literature, nor is there much expert guidance for providers to connect with when facing management challenges.

In response, the Foundation is launching the Provider Partnership Initiative. This Initiative will provide diverse resources and support for providers to utilize in the management of these patients. The Initiative will be comprised of:

PROVIDER EDUCATION WORKSHOP ON sVWD

NOVEMBER 2025

After the successful pilot of the Provider Education Workshop on sVWD in November 2024, the Foundation will host the second Workshop November 14- 16, 2025 in West Palm Beach, FL.

The Workshop will expand to include an optional pre-workshop Mental Health Symposium early on Friday, November 14 and will include additional sessions and an Innovation Fair within the Workshop.

Registration will open in Spring 2025 – be sure to SIGN UP for our newsletter and announcements so you won’t miss the registration opening!

Learn more about the 2024 Provider Education Workshop.

WEBSITE RESOURCES FOR PROVIDERS

FIRST QUARTER 2025

The Foundation’s website includes many resources helpful to providers interested in sVWD, including articles, publications and recorded sessions on the diagnosis and management of sVWD. Be sure to check back regularly for newly added RESOURCES!

SHADOWING PROGRAM AT THE sVWD PATIENT CONFERENCE

JULY 2025

The Foundation will hold its ninth annual National sVWD Patient Conference July 18-21, 2025. We often receive questions from providers about attending so they may learn more about sVWD and engage with sVWD patients to better understand their experience. In response, we are launching a shadowing program at the July 2025 Conference.

The shadowing program is open to providers in all disciplines who care for sVWD patients.

Interested providers will have an opportunity to pair with a Foundation Faculty member as they participate in the Conference. Along with increasing the providers’ exposure to the patient experience and disease state knowledge, we expect this to expand the Faculty for future conferences and activities as we engage with new providers from around the country.

The Foundation will provide a hotel room, meals and all supplies for the four-day event. Providers who experience a challenge with the cost of airfare will be able to apply for travel assistance.

If you are interested in learning more, how to apply or have questions, please contact Jeanette Cesta, Executive Director, at 561-373-3889 or Jcesta@VWDConnect.org

To learn about our past conferences and view agendas and Faculty Members, CLICK HERE.

RECOMMENDATIONS ON THE DIAGNOSIS
AND MANAGEMENT OF sVWD

ONGOING

As the Foundation’s Expert International Consensus Panel brings to completion the project of creating a definition of severe von Willebrand disease, we have now assembled a body of expert clinicians and researchers from around the globe to begin developing guidance for sVWD patient diagnosis and management.

This project will be ongoing and will address a variety of issues such as diagnosis, prophylaxis, surgical considerations, heavy menstrual bleeding, and access to appropriate care to help inform providers’ practice and will be available on our website.