{"id":156,"date":"2021-06-11T10:45:18","date_gmt":"2021-06-11T10:45:18","guid":{"rendered":"https:\/\/bf2021.wpengine.com\/?page_id=156"},"modified":"2025-10-21T03:53:52","modified_gmt":"2025-10-21T03:53:52","slug":"welcome-test-page","status":"publish","type":"page","link":"https:\/\/livingwithvwd.org\/","title":{"rendered":"Finding support for VWD? Connect with people like you."},"content":{"rendered":"<p><img fetchpriority=\"high\" decoding=\"async\" class=\"alignnone wp-image-436\" title=\"\" src=\"http:\/\/livingwithvwd.org\/wp-content\/uploads\/2024\/04\/VWD-300x125.png\" alt=\"A welcome banner for Living With Von Willebrand's Disease  community featuring a hopeful patient and caregiver\" width=\"773\" height=\"322\" srcset=\"https:\/\/livingwithvwd.org\/wp-content\/uploads\/2024\/04\/VWD-300x125.png 300w, https:\/\/livingwithvwd.org\/wp-content\/uploads\/2024\/04\/VWD.png 720w\" sizes=\"(max-width: 773px) 100vw, 773px\" \/><\/p>\n<p><a href=\"https:\/\/forum.livingwithvwd.org\/\"><strong>Living with VWD <\/strong><\/a>\u00a0is an online patient support community powered by <strong data-start=\"399\" data-end=\"418\">BensFriends.org<\/strong>, a trusted network of rare disease communities. Our goal is to make sure that people living with <strong data-start=\"516\" data-end=\"548\">Von Willebrand Disease (VWD)<\/strong> and their loved ones have a safe, supportive place to connect, share experiences, and find understanding.<\/p>\n<p data-start=\"658\" data-end=\"869\"><strong data-start=\"658\" data-end=\"690\">Von Willebrand Disease (VWD)<\/strong> is one of the most common inherited bleeding disorders. It happens when the body doesn\u2019t have enough <strong data-start=\"792\" data-end=\"823\">von Willebrand factor (vWF)<\/strong> \u2014 a protein that helps blood clot properly.<\/p>\n<p data-start=\"871\" data-end=\"1211\">There are several types of VWD. The <strong data-start=\"907\" data-end=\"926\">inherited forms<\/strong> include <em data-start=\"935\" data-end=\"943\">Type 1<\/em>, <em data-start=\"945\" data-end=\"953\">Type 2<\/em>, and <em data-start=\"959\" data-end=\"967\">Type 3<\/em>. <em data-start=\"969\" data-end=\"977\">Type 1<\/em> is the most common and usually causes mild symptoms like frequent nosebleeds or easy bruising, though some people may have more serious bleeding. There\u2019s also a <strong data-start=\"1139\" data-end=\"1156\">platelet type<\/strong> and an <strong data-start=\"1164\" data-end=\"1181\">acquired type<\/strong>, which develop differently.<\/p>\n<p data-start=\"1213\" data-end=\"1545\">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 \u2014 different ages, beliefs, and backgrounds \u2014 but share the same goal: to support one another through every step of the journey.<\/p>\n<p style=\"text-align: right;\"><strong><a href=\"http:\/\/livingwithvwd.org\/?page_id=198\" target=\"_blank\" rel=\"noopener\">Read More&#8230;<\/a><\/strong><\/p>\n<p><iframe title=\"Rare Disease Patient Communities by BensFriends.org\" width=\"648\" height=\"365\" src=\"https:\/\/www.youtube.com\/embed\/YBeRFnJkleU?list=PLho5Q53hrd4arNr-uM9ToVKSo09Lvg8Cx\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<h2 style=\"text-align: left;\"><strong>How is Ben\u2019s Friends Different from Social Media and Other Support Sites?<\/strong><\/h2>\n<p>Our mission at Ben\u2019s 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.<\/p>\n<p>We\u2019re interested in you as a person, and in your struggles as a rare disease patient.\u00a0 But we don\u2019t want to know your name or where you live. We won\u2019t 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.\u00a0 Your information is never shared, and your activity never tracked by adware.<\/p>\n<p>When Ben\u2019s Friends asks for the country and region you live in, that\u2019s 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.\u00a0 That\u2019s important when it comes to giving and getting support. Because we are all about support, and we\u2019re all in this together..\u00a0<\/p>\n<p>Ben\u2019s Friends: <strong>Safe and Supportive.\u00a0<\/strong><br \/>And <strong>anonymous<\/strong> to keep it that way.<\/p>\n<div>\u00a0<\/div>\n<h2 style=\"text-align: left;\"><b>Why create an account at <\/b><strong>Living with Von Willebrand&#8217;s Disease Community<\/strong><b>?<\/b><\/h2>\n<p><span style=\"font-weight: 400;\">Posts on the different Ben\u2019s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you\u2019re looking for but there are many things you won\u2019t be able to do unless you create an account. These include:<\/span><\/p>\n<p><i><span style=\"font-weight: 400;\">Making your own posts<\/span><\/i><span style=\"font-weight: 400;\">. Although you\u2019re able to find useful information just by reading other members\u2019 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\u2019t be possible unless you create a new user account.<\/span><\/p>\n<p><i><span style=\"font-weight: 400;\">Viewing other members\u2019 profiles<\/span><\/i><span style=\"font-weight: 400;\">. 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\u2019re 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.\u00a0\u00a0<\/span><\/p>\n<p><i><span style=\"font-weight: 400;\">Sending private messages.<\/span><\/i><span style=\"font-weight: 400;\"> 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.<\/span><\/p>\n<p><span style=\"font-weight: 400;\"><a href=\"https:\/\/forum.livingwithvwd.org\/\" target=\"_blank\" rel=\"noopener\">Click here to create an account and join.<\/a>\u00a0<\/span><\/p>\n<div>\u00a0<\/div>\n<h2 style=\"text-align: left;\"><strong>Latest Discussions<\/strong><\/h2>\n\n<div class=\"feedzy-13b4ac3790a973082c895955c56e7533 feedzy-rss\"><ul><li  style=\"padding: 8px 0 13px\" class=\"rss_item\"><span class=\"title\"><a href=\"https:\/\/forum.livingwithvwd.org\/t\/brandee-cookson-living-strong-with-von-willebrand-disease\/1205\" target=\"_blank\" rel=\" noopener\">Brandee Cookson: Living Strong With Von Willebrand Disease<\/a><\/span><div class=\"rss_content\" style=\"\"><small>by <a href=\"\/\/forum.livingwithvwd.org\" target=\"_blank\" title=\"forum.livingwithvwd.org\">ModSupport<\/a> on December 10, 2025 <\/small><p>Living with Von Willebrand Disease (VWD) can be challenging, but Brandee Cookson\u2019s story shows that resilience, proper care, and community support can make all the difference.\nBrandee was diagnosed with Type 3 VWD at age 12 after experiencing heavy bleeding and frequent health challenges that disrupted her everyday life. Before her diagnosis, she faced uncertainty, missed school days, and [&hellip;]<\/p><\/div><\/li><li  style=\"padding: 8px 0 13px\" class=\"rss_item\"><span class=\"title\"><a href=\"https:\/\/forum.livingwithvwd.org\/t\/today-is-giving-tuesday-here-are-two-easy-ways-to-help-our-community\/1204\" target=\"_blank\" rel=\" noopener\">Today is Giving Tuesday. Here Are Two Easy Ways to Help Our Community<\/a><\/span><div class=\"rss_content\" style=\"\"><small>by <a href=\"\/\/forum.livingwithvwd.org\" target=\"_blank\" title=\"forum.livingwithvwd.org\">Ben_Munoz<\/a> on December 2, 2025 <\/small><p>Hi everyone,\nToday is Giving Tuesday, a day when many people look for meaningful causes to support. If you would like to help our community today, here are two simple and meaningful options.\n1) Share our campaign with friends or family\nThis is one of the most helpful things members can do. Even if you cannot donate, you can still make a big impact by spreading the word. Here are a few [&hellip;]<\/p><\/div><\/li><li  style=\"padding: 8px 0 13px\" class=\"rss_item\"><span class=\"title\"><a href=\"https:\/\/forum.livingwithvwd.org\/t\/our-community-is-coming-together-here-is-how-you-can-help\/1203\" target=\"_blank\" rel=\" noopener\">Our Community Is Coming Together. Here Is How You Can Help<\/a><\/span><div class=\"rss_content\" style=\"\"><small>by <a href=\"\/\/forum.livingwithvwd.org\" target=\"_blank\" title=\"forum.livingwithvwd.org\">Ben_Munoz<\/a> on November 25, 2025 <\/small><p>Hi everyone,\nAs we approach the end of the year, our entire Ben\u2019s Friends network is launching our annual community support campaign. Each forum plays an important role, so we wanted to share a few simple ways you can help strengthen this space we all rely on.\nMost importantly, there is never any expectation to give financially. Just being here, supporting one another, and sharing your [&hellip;]<\/p><\/div><\/li><li  style=\"padding: 8px 0 13px\" class=\"rss_item\"><span class=\"title\"><a href=\"https:\/\/forum.livingwithvwd.org\/t\/personal-journey-jennifers-story-cdc-may-14-2024\/1200\" target=\"_blank\" rel=\" noopener\">Personal Journey: Jennifer&#8217;s Story (CDC \u2013 May 14, 2024)<\/a><\/span><div class=\"rss_content\" style=\"\"><small>by <a href=\"\/\/forum.livingwithvwd.org\" target=\"_blank\" title=\"forum.livingwithvwd.org\">ModSupport<\/a> on July 18, 2025 <\/small><p>Story told Jennifer from CDC.\nJennifer, born in 1965, was diagnosed at age 10 with both hemophilia B and von Willebrand disease (VWD) after a tonsillectomy led to unexpected bleeding. Originally, she and her family didn\u2019t fully grasp the seriousness\u2014until others in her family, including a cousin and grandmother, also experienced bleeding issues.\nDespite chronic knee problems and multiple [&hellip;]<\/p><\/div><\/li><li  style=\"padding: 8px 0 13px\" class=\"rss_item\"><span class=\"title\"><a href=\"https:\/\/forum.livingwithvwd.org\/t\/choosing-the-right-doctor-for-von-willebrand-disease\/1199\" target=\"_blank\" rel=\" noopener\">Choosing the Right Doctor for von Willebrand Disease<\/a><\/span><div class=\"rss_content\" style=\"\"><small>by <a href=\"\/\/forum.livingwithvwd.org\" target=\"_blank\" title=\"forum.livingwithvwd.org\">ModSupport<\/a> on July 18, 2025 <\/small><p>If you\u2019re experiencing unusual bleeding, frequent nosebleeds, or heavy periods, you might be dealing with von Willebrand disease (VWD). But getting the right diagnosis and care starts with one important step: choosing the right doctor.\nMany people assume the first doctor they see is the only option. But with a rare condition like VWD, that can lead to frustration and delays. At Ben\u2019s Friends, [&hellip;]<\/p><\/div><\/li><li  style=\"padding: 8px 0 13px\" class=\"rss_item\"><span class=\"title\"><a href=\"https:\/\/forum.livingwithvwd.org\/t\/what-is-von-willebrand-disease-a-quick-guide-to-the-most-common-bleeding-disorder\/1198\" target=\"_blank\" rel=\" noopener\">What Is von Willebrand Disease? A Quick Guide to the Most Common Bleeding Disorder<\/a><\/span><div class=\"rss_content\" style=\"\"><small>by <a href=\"\/\/forum.livingwithvwd.org\" target=\"_blank\" title=\"forum.livingwithvwd.org\">ModSupport<\/a> on July 18, 2025 <\/small><p>Do you bruise easily, get frequent nosebleeds, or bleed heavily from small cuts or during your period? You might have von Willebrand disease (VWD) \u2014 the most common inherited bleeding disorder.\nWhat Is VWD?\nVWD is caused by a problem with a blood-clotting protein called von Willebrand factor (VWF). People with VWD either don\u2019t have enough of this protein, or it doesn\u2019t work properly. VWF [&hellip;]<\/p><\/div><\/li><li  style=\"padding: 8px 0 13px\" class=\"rss_item\"><span class=\"title\"><a href=\"https:\/\/forum.livingwithvwd.org\/t\/looking-for-your-von-willebrands-stories\/1188\" target=\"_blank\" rel=\" noopener\">Looking For Your Von Willebrand&#8217;s Stories!<\/a><\/span><div class=\"rss_content\" style=\"\"><small>by <a href=\"\/\/forum.livingwithvwd.org\" target=\"_blank\" title=\"forum.livingwithvwd.org\">ModSupport<\/a> on January 11, 2024 <\/small><p>@trust_level_0\nDear Von Willebrand\u2019s Support Member,\nFor over 10 years, the Ben\u2019s Friends online rare patient communities, run &amp; moderated by rare patients themselves, have been a source of support for many of us, living with rare diseases.\nBut it\u2019s not enough. We would like more people to know about this wonderful service.\nTo that effect, we are planning a social media campaign that [&hellip;]<\/p><\/div><\/li><li  style=\"padding: 8px 0 13px\" class=\"rss_item\"><span class=\"title\"><a href=\"https:\/\/forum.livingwithvwd.org\/t\/self-advocacy-opportunity\/1187\" target=\"_blank\" rel=\" noopener\">Self advocacy Opportunity<\/a><\/span><div class=\"rss_content\" style=\"\"><small>by <a href=\"\/\/forum.livingwithvwd.org\" target=\"_blank\" title=\"forum.livingwithvwd.org\">ModSupport<\/a> on October 2, 2023 <\/small><p>ModSupport\n1m\nBack 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 [&hellip;]<\/p><\/div><\/li><li  style=\"padding: 8px 0 13px\" class=\"rss_item\"><span class=\"title\"><a href=\"https:\/\/forum.livingwithvwd.org\/t\/help-yourself-and-others\/1186\" target=\"_blank\" rel=\" noopener\">Help Yourself and Others!<\/a><\/span><div class=\"rss_content\" style=\"\"><small>by <a href=\"\/\/forum.livingwithvwd.org\" target=\"_blank\" title=\"forum.livingwithvwd.org\">ModSupport<\/a> on October 2, 2023 <\/small><p>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 [&hellip;]<\/p><\/div><\/li><li  style=\"padding: 8px 0 13px\" class=\"rss_item\"><span class=\"title\"><a href=\"https:\/\/forum.livingwithvwd.org\/t\/calling-mothers-of-children-with-rare-diseases-of-all-ages\/1182\" target=\"_blank\" rel=\" noopener\">\ud83d\udce2 Calling mothers of children with rare diseases of all ages<\/a><\/span><div class=\"rss_content\" style=\"\"><small>by <a href=\"\/\/forum.livingwithvwd.org\" target=\"_blank\" title=\"forum.livingwithvwd.org\">ModSupport<\/a> on August 12, 2023 <\/small><p>Ben\u2019s Friends has launched a new community for moms raising children with rare diseases and chronic conditions and we are inviting you to join\n\n  \n      \n\n      Warrior Moms Living with Rare Disease\n  \n\n  \n    \n\nWarrior Moms Living with Rare Disease\n\n  Warrior Moms fighting rare diseases together.\n\n\n  \n\n  \n    \n    \n  \n\n  \n\n\nPlease share the community with other families who are affected. 70% [&hellip;]<\/p><\/div><\/li><\/ul> <\/div><style type=\"text\/css\" media=\"all\">.feedzy-rss .rss_item .rss_image{float:left;position:relative;border:none;text-decoration:none;max-width:100%}.feedzy-rss .rss_item .rss_image span{display:inline-block;position:absolute;width:100%;height:100%;background-position:50%;background-size:cover}.feedzy-rss .rss_item .rss_image{margin:.3em 1em 0 0;content-visibility:auto}.feedzy-rss ul{list-style:none}.feedzy-rss ul li{display:inline-block}<\/style>","protected":false},"excerpt":{"rendered":"<p>Living with VWD \u00a0is 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 [&hellip;]<\/p>\n","protected":false},"author":5,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"class_list":["post-156","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.7 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Finding support for VWD? 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