This is a forum for GNE Myopathy where I discuss the challenges and insights I encounter on my journey in living with a progressively "weakening" disease. GNE Myopathy is also known as Hereditary Inclusion Body Myopathy (HIBM). I will invite others to share their stories, tips, and comments. I will discuss potential treatments, clinical trials, current research, and resources available for patients with GNE Myopathy.
tara
LA Mayor's Office Acknowledges the NDF's Advocacy with GNEM
Friday, July 6, 2012
Phase 1 for ManNAc announcement, not recruiting yet
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