Welcome to Living with Von Willebrand’s Disease Community!
LivingwithVWD.org is an online support group for patients, friends and families affected by Von Willebrand’s Disease managed by Ben’s Friends. 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.
Von Willebrand’s Disease is a common hereditary coagulation abnormality caused by a qualitative or quantitative deficiency of von Willebrand factor (vWF). Von Willebrand factor (vWF) is a protein that is essential for platelet adhesion.
There are three forms of VWD: inherited, acquired and pseudo or platelet type. There are three types of inherited VWD: Type I, Type II and Type III. Platelet type VWD is also an inherited condition.
VWD Type I is more common than Types II and III, and those that have it are typically asymptomatic or may experience mild symptoms such as nosebleeds, although there may be severe symptoms in some cases.
This site is a virtual community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.
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.
- Looking For Your Von Willebrand’s Stories!by ModSupport on January 11, 2024
@trust_level_0 Dear Von Willebrand’s Support Member, For over 10 years, the Ben’s Friends online rare patient communities, run & moderated by rare patients themselves, have been a source of support for many of us, living with rare diseases. But it’s not enough. We would like more people to know about this wonderful service. To that effect, we are planning a social media campaign that […]
- Self advocacy Opportunityby ModSupport on October 2, 2023
ModSupport 1m Back in 2012 when the FDASIA reauthorized the Prescription Drug User Fee Act (PDUFA), The FDA pioneered the use of patient focused drug development meetings to help address the need for systematic collection of direct patient input. To date they have held twenty-two meetings each focused on a different disease area and have identified key findings including that patients living with […]
- Help Yourself and Others!by ModSupport on October 2, 2023
Back in 2012 when the FDASIA reauthorized the Prescription Drug User Fee Act (PDUFA), The FDA pioneered the use of patient focused drug development meetings to help address the need for systematic collection of direct patient input. To date they have held twenty-two meetings each focused on a different disease area and have identified key findings including that patients living with a disease are […]
- 📢 Calling mothers of children with rare diseases of all agesby ModSupport on August 12, 2023
Ben’s Friends has launched a new community for moms raising children with rare diseases and chronic conditions and we are inviting you to join Warrior Moms Living with Rare Disease Warrior Moms Living with Rare Disease Warrior Moms fighting rare diseases together. Please share the community with other families who are affected. 70% […]
- Welcome to Gregorioby ModSupport on August 3, 2023
Hey everyone, I’d just like to introduce Gregorio! He’s a new member here, living in Nevada and has a pretty full family of vWD patients. It’s great to see a new member! We’ve been quiet for quite some time but with some new partnerships that Ben’s Friends has started, I’m hoping we will have a small influx of new members. @Gregorio welcome! It would be great if you fancy […]
- 7 Things to Look for When Choosing a Doctorby BF_Writer on May 8, 2023
Sascha Gallardo – November 1, 2022 When you are experiencing symptoms and know that something is wrong, do you settle with the first doctor you meet? Like many other patients, do you also think that doctors know everything so you should believe and simply follow everything they say? At Ben’s Friends, one of the things we always encourage our members to do is to advocate for their own health. […]
- Rare Disease Diagnosis: Difficulties and Advancementsby BF_Writer on March 8, 2023
Sascha Gallardo – August 31, 2020 Delays in getting an accurate diagnosis for a rare disease is very common. Patients would visit a physician, present their symptoms, and then they would be told there is nothing wrong with them. They’d visit another one, would be referred to a specialist, and then get some tests done only to go back to square one after a few months. The same process would be […]
- Connect with Ben’s Friends!by BF_Writer on July 28, 2022
Sascha Gallardo – July 1, 2022 Good news! You can now receive a copy of Ben’s Friends’ quarterly e-newsletter. By subscribing to our newsletter, you will: Get updates about our new and existing projects. Aside from keeping our communities safe and supportive, Ben’s Friends is also working on other projects that will benefit patients, their families, and loved ones. These include, […]
- Ben’s Friends Self-Advocacy Project for Membersby BF_Writer on July 11, 2022
Sascha Gallardo – January 31, 2022 Ben’s Friends to launch Self-Advocacy Project for members Having a rare and chronic illness is definitely not easy. From searching for an accurate diagnosis to finding the doctor you can trust as well as undergoing different forms of treatments and procedures, all these things and more certainly bring a lot of challenges. Despite these, however, we believe […]
- Vwd and hysterectomyby CrystalBrooks on June 20, 2022
I’m having a hysterectomy june 29th do to dr finding cancer on my female organs. Has anyone had one need advice on what suspect with surgery. 3 posts – 3 participants Read full topic