Thank you for considering participating in the sVWD Patient Registry – this is your chance to make a significant difference, and we need each of you involved. Every participant brings one more piece in the VWD puzzle.
The Von Willebrand Disease community has been eager for the power and potential of the Patient Registry. So much of what we understand about this disease comes from the unique life stories told by patients. As the U.S. National Patient Organization for sVWD, we need our collective voice to be heard and validated by a healthcare system that often marginalizes or misunderstands our struggles and issues. This is a very complex disease. The Registry is our stake in the ground: we’re serious about finding and funding a cure.
I hope the following information is useful in your decision-making process, whether you are a potential participant in the Registry, a provider who can encourage patient participation, or a donor who is looking for a way to make an impactful contribution. We have taken extraordinary steps to ensure that participating is as easy as possible for patients and their privacy and safety is our top priority.
Please join us as we all Connect for the Cure,
Jeanette Cesta, Executive Director