Oculopharyngeal muscular dystrophy or OPMD is a rare genetic disorder that is characterized by muscle weakness. Symptoms usually manifest in
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Finally we have a covid vaccine. I am amazed at the kick back from the Anti Vaxxers seeing it as
Read MoreJust like that, 2020 is almost done. I know we say this all the time, but the days seem to
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Can you believe it? Our Living with Psoriatic Arthritis community has just turned 10 this month. Time flies sooo fast.
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One of the things the Ben’s Friends team always tries to emphasize in the communities is to never to feel
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Basic protocols never change based on a particular set of circumstances. In the cases of vaccines, those protocols are not
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Ben’s Friends co-founder and board member Scott Orn was featured recently in John Garrett’s podcast. Titled What’s Your And?, the
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Ben’s Friends has been successfully running online patient communities for thirteen years and it just continues to grow. We are
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Getting the most out of your consultation with a doctor for a rare disease is already challenging. Now that we
Read MoreGlobal Gene’s podcast interviewed Ben Munoz recently about his experience as a survivor of an arteriovenous malformation stroke, connecting with
Read MoreIt’s Living with Eagle Syndrome community founding anniversary! Specifically, on the 27th of September in 2010, the community that provides
Read MoreA recent study conducted by researchers from Stanford University found immunotherapy as a promising treatment for idiopathic pulmonary fibrosis. IPF
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Ben’s Friends co-founder and chairman, Ben Munoz, was interviewed recently for the Rare Leader, a regular feature of the Global
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I am blessed enough to be married to my best friend, Elaine. We met at church in 1992, became really
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Results of a genetic study published on June 23 in PLoS Med showed two polycystic ovary syndrome subtypes. “Using an
Read MoreSome news about endometriosis research has been on the headlines lately which could be promising for women suffering from this
Read MoreDelays in getting an accurate diagnosis for a rare disease is very common. Patients would visit a physician, present their
Read MoreWe’re so excited to announce that our community sites will soon have a fresh new look. Compared with the old
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Recent studies show encouraging results of the use of eculizumab in treating myasthenia gravis. Published in the August 2020 issue
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