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 VWD from all perspectives. Its unpredictability. And its capability 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 though good old postcards and letters. The Foundation facilitates and fosters these friendships. And they are deep and built to last a lifetime.
Membership automatically makes you eligible to attend the Foundation’s annual National Type 3/Severe VWD Conference, regardless of whether it’s in-person or virtual. This four-day event has reached “Must Go-To” status for patients, our researchers and our faculty of medical professionals, social workers and other providers specializing in bleeding disorders. Largely driven by Members, topics, sessions, breakouts, discussions and educational content have expanded significantly since the first conference in 2017 and now include a wide range of subjects from relationships, coping and COVID experiences, to news of treatments, joint health, and exercise regimes.
When COVID necessitated the cancellation of in-person Summer 2020 Conference, the Foundation introduced a series of vibrant virtual events to engage and connect members. These included launching a private Facebook page, starting a Book Club, and using ZOOM to host Trivia Game Nights, Mens and Ladies Only Nights and Educational evenings provided by our Faculty that helped ease the stress of quarantine through the pandemic.
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 witness to Type 3/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 Type 3/Severe VWD will have easier times than the previous generation. And so on. We all have a part to play.
VWD Connect Foundation (VCF) has taken strong action to connect Members to researchers globally, because ultimately, we want to witness the cure for Type 3/Severe VWD, and we must support their endeavors. Patient voice is a critical piece of this process.
VCF has formed an eighteen-member international Medical and Scientific Advisory Board (MASB) to develop a plan for finding a cure. This initial 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.
