WHY MEMBERSHIP MATTERS
There is a reason why “Connect” is etched in the name of this Foundation, and there has never been a more critical time to become a Member than now!
CONNECT with
other PATIENTS
In becoming a Member, you quickly realize you are never alone. You are among a tight community of people who know exactly what it is like living with and managing severe VWD from all perspectives, its unpredictability, and its ability to shake and shape every aspect of your days, weeks, and planned activity while challenging your resiliency.
You will learn, listen and lean on each other and be refreshed and revitalized by friendships made over the phone, Facebook, ZOOM and yes, even through good old postcards and letters. The Foundation facilitates and fosters these friendships – and they are built to last a lifetime.
CONNECT to
CONFERENCES and EVENTS
Membership automatically makes you eligible to attend the Foundation’s annual U.S. National Severe VWD Conference. This four-day event has reached “Must Go-To” status for our patients, their families and supporters, and medical professionals specializing in severe VWD. Largely driven by Members, educational content and topics for breakout discussions have expanded significantly since the first conference in 2017 and now include a wider and deeper range of subjects.
The Foundation offers a series of vibrant virtual events to engage and connect Members. These include a private Facebook group, Monthly Member Meetup, Very Witty Discussions (VWD) Book Club, Trivia Game Nights, evening Educational Sessions provided by our Faculty, and other special events featuring a variety of guests.
CONNECT to
SPECIALIZED PROVIDERS
One of the important missions of VWD Connect Foundation is to connect Members (Patients) to the medical community for education and advancement of this disease. This will consequentially improve patient quality of life as an outcome. It is our saying at the Foundation “it’s not complaining, it’s reporting”. Our Members are first-hand witnesses to severe von Willebrand disease and it is our job and responsibility to share each of our personal stories.
Collectively we will enhance our ability to be more fully understood in hospitals, emergency rooms, doctor’s offices and school rooms. Today’s children with severe VWD will have easier times than the previous generation. And so on. We all have a part to play.
CONNECT to
RESEARCH
Ultimately, we want to witness the cure for severe VWD. We believe patient voice is a critical piece in this process. VWD Connect Foundation has taken strong and proactive action to connect Members to research happening globally, to support the endeavors of those working towards a cure and helping sVWD patients to access better management and treatment along the way.
VCF has formed an eighteen-member International Medical and Scientific Advisory Board (MSAB) to develop a plan for finding a cure. This committee of international researchers, scientists, specialists in bleeding disorders and related disease experts will be expanded as the parameters are further defined and specific work emerges.
VCF had been laying the groundwork for this research initiative since its inception.
Are you a severe VWD patient interested in joining us as a Foundation Member?
For more information about eligibility and how to join, click below.