Welcome to Living with Von Willebrand’s Disease Community!
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?
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.
- 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. […]
- Spotlight: Ben’s Friends former Intern, Dr. Melissa Jones, MDby BF_Writer on April 25, 2023
Sascha Gallardo – June 15, 2020 The patients who visit our sites have tons of questions on their mind related to their symptoms, which clinic to visit, the medications they are taking, and the treatment procedures they will undergo. They want a space to find answers as well as comfort from people who truly care. The Ben’s Friends team, on the other hand, interacts with the members on a daily […]
- Ben’s Friends inks partnership with ClozTalkby BF_Writer on March 22, 2023
Sascha Gallardo – July 1, 2020 We’re excited to announce that Ben’s Friends has partnered with ClozTalk, a social impact company that helps charities raise people’s awareness of their mission. ClozTalk now designs apparel like t-shirts, hoodies, and jackets with the logo of Ben’s Friends. As more people get to know our organization through the sale of these items, we can reach more […]
- 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 […]
- Global Genes’ Rare Daily website features Ben Munozby BF_Writer on March 7, 2023
Sascha Gallardo – September 29, 2020 Ben’s Friends co-founder and chairman, Ben Munoz, was interviewed recently for the Rare Leader, a regular feature of the Global Genes’ Rare Daily website. In the Q&A piece, Ben shares how the organization started, its mandate and strategy, new projects and management philosophy. Ben underscores how important focus is in keeping the organization […]
- Some of Ben’s Friends secrets to maintaining healthy communitiesby BF_Writer on February 23, 2023
Sascha Gallardo – October 26, 2020 Ben’s Friends has been successfully running online patient communities for thirteen years and it just continues to grow. We are home to the most active communities of AVM survivors, people living with psoriatic arthritis, fibromyalgia, and eagle syndrome, to name a few. Thanks to our moderators who dedicate their time and effort to ensure that our […]
- What’s Your And? Podcast features Scott Ornby BF_Writer on February 14, 2023
Sascha Gallardo – November 5, 2020 Ben’s Friends co-founder and board member Scott Orn was featured recently in John Garrett’s podcast. Titled What’s Your And?, the podcast focuses on the guests’ interests or what they love to do outside of their job and how these interests affect their work. In the episode, Scott talked about his volunteer work at Ben’s Friends, which is what he […]
- Once Upon a Gene podcast Features Ben’s Friendsby BF_Writer on February 8, 2023
Sascha Gallardo – February 22, 2021 Once Upon a Gene recently interviewed Ben Munoz about the story behind the founding of Ben’s Friends, what motivated him to embark on this journey of building online communities for rare diseases, and what ripple effect if any, does the community have on the people that found help on the sites. Ben shared how after surviving an arteriovenous malformation […]
- Benefits of Having a Rare Disease and Chronic Illness Support Groupby BF_Writer on February 8, 2023
Sascha Gallardo – January 29, 2021 Having a rare or chronic illness can make a person feel isolated and lonely. They may have people who definitely care but they would constantly need to connect with someone who is going through the same things. Having people around who care is one thing, but having people in your life who really “get it” and know exactly what you are going through, is […]
- Ben’s Friends Lead Internsby BF_Writer on January 31, 2023
Sascha Gallardo – February 1, 2021 Keeping Ben’s Friends communities safe and supportive would not be possible without the help of wonderful people who devote their time and skills to meet this objective. We have moderators who take care of their respective communities in various ways such as by screening membership applications and flagging posts that affect the friendly atmosphere we […]