Eagle Syndrome (ES) is a rare condition caused by the elongation of either or both temporal styloid processes, the pointed
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John Stamler, Ben’s Friends’ treasurer and a rare disease survivor himself, had a conversation with Garry Turner in the Episode
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You must be wondering what Seenie has been doing these days. Well, I’ve been building our Google Classrooms and library
Read MoreI remember talking, not so long ago, with one of our AVM veterans. He has been battling this disease for
Read MoreIn April 2019, FDA held a public meeting to obtain patient and caregiver perspectives on the common issues and symptoms
Read MoreWhen we recently asked our moderators what they love about their role, we got a variety of reactions. Not surprising:
Read MoreWe did It! Ten Ben’s Friends members traveled for more than 500 miles on foot and afloat to raise awareness
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Clasina Field, a rare disease patient herself believes that her true rehabilitation came in the form of an online support
Read MoreTen Ben’s Friends Members and Friends are traveling to Glacier National Park This August for five active days to prove
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Ben’s Friends, our network of patient communities and Rare Disease Review, a medical and health policy journal hosted a miniconference
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