Living with VWD is an online patient support community powered by BensFriends.org, a trusted network of rare disease communities. Our goal is to make sure that people living with Von Willebrand Disease (VWD) and their loved ones have a safe, supportive place to connect, share experiences, and find understanding.
Von Willebrand Disease (VWD) is one of the most common inherited bleeding disorders. It happens when the body doesn’t have enough von Willebrand factor (vWF) — a protein that helps blood clot properly.
There are several types of VWD. The inherited forms include Type 1, Type 2, and Type 3. Type 1 is the most common and usually causes mild symptoms like frequent nosebleeds or easy bruising, though some people may have more serious bleeding. There’s also a platelet type and an acquired type, which develop differently.
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Sunsetting of Living with VWD
Since 2006, Ben’s Friends has provided safe and supportive online communities for patients living with rare diseases and chronic illnesses, as well as their caregivers and families.
Today, patients can connect through many online platforms and social media communities. In many ways, we believe our mission has been accomplished — helping create a world where patients can more easily find support and connection.
After careful consideration, the Executive Board of Ben’s Friends has made the difficult decision to close several online support communities, including the Living with VWD community.
Although this community is closing, we encourage members to continue connecting through other trusted patient communities, advocacy organizations, and online support groups serving individuals and families affected by VWD. For more information and helpful resources, please visit our archived community page – vwd.bensfriends.org, where we have gathered alternative support options and disease-specific resources to help guide you to ongoing support.
It has been our privilege and honor to serve the VWD community over these many years. Thank you to all who contributed to this rare disease site.
The Board and Staff of Ben’s Friends Inc.
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This community is open to patients and family members (ages 12 and up) looking for information, emotional support, or a place to talk with others who understand. Our members come from many walks of life — different ages, beliefs, and backgrounds — but share the same goal: to support one another through every step of the journey.
How is Ben’s Friends Different from Social Media and Other Support Sites?
Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
We’re interested in you as a person, and in your struggles as a rare disease patient. But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe. Your information is never shared, and your activity never tracked by adware.
When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live. That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together..
Ben’s Friends: Safe and Supportive.
And anonymous to keep it that way.
Why create an account at Living with Von Willebrand’s Disease Community?
Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:
Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.
Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.
Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.
Click here to create an account and join.
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