{"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":"2026-06-13T08:56:44","modified_gmt":"2026-06-13T08:56:44","slug":"welcome-test-page","status":"publish","type":"page","link":"https:\/\/myositissupport.org\/","title":{"rendered":"Finding support for Myositis? Connect with people like you."},"content":{"rendered":"

BensFriends.org<\/a>,<\/strong><\/em>\u00a0 powers Myositis Support Community,<\/strong> an online support network for patients with rare diseases. \u00a0\u00a0Our mission at Ben\u2019s Friends <\/em>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

Myositis (Idiopathic Inflammatory Myopathy) is a group of rare conditions that cause muscle inflammation and weakness. Common types include dermatomyositis (DM), polymyositis (PM), juvenile myositis (JM), and inclusion-body myositis (IBM).<\/span><\/p>\n

National Institutes of Health GARD (Genetics and Rare Diseases Information Center) has a user-friendly medical resource page <\/span>here<\/span><\/a>.\u00a0<\/span><\/p>\n

Sunsetting of Myositis Support<\/strong><\/p>\n

Since 2006, Ben\u2019s Friends has provided safe and supportive online communities for patients living with rare diseases and chronic illnesses, as well as their caregivers and families.<\/em><\/p>\n

Today, patients can connect through many online platforms and social media communities. In many ways, we believe\u00a0our mission has been accomplished<\/strong>\u00a0\u2014 helping create a world where patients can more easily find support and connection.<\/em><\/p>\n

After careful consideration, the Executive Board of Ben\u2019s Friends has made the difficult decision to close several online support communities, including the Myositis Support community.<\/em><\/p>\n

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 myositis. For more information and helpful resources, please visit our archived community page \u2013 myositis.bensfriends.org<\/a>, where we have gathered alternative support options and disease-specific resources to help guide you to ongoing support.<\/em><\/p>\n

It has been our privilege and honor to serve the Myositis Support community over these many years. Thank you to all who contributed to this rare disease site.<\/em><\/p>\n

The Board and Staff of Ben\u2019s Friends Inc.<\/em><\/p>\n

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Ben\u2019s Friends\u2019 MyositisSupport.org<\/span> 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.<\/span><\/p>\n

Though we get occasional visits from medical doctors, the site is not routinely supported by medical professionals. Nobody here can diagnose you or tell you what your treatment choices \u201cshould\u201d be. We might inform your choices by sharing individual experiences and information developed by study as lay people. But <\/span>MyositisSupport.org<\/span> is not intended to replace the advice or treatment of licensed medical professionals. Readers should validate any information they take away from here, against the experience of a licensed medical doctor. Site owners and moderators are not legally responsible for the accuracy of information shared on the site.<\/span><\/p>\n

Read More…<\/a><\/strong><\/p>\n