Ultragenyx has posted on their web site the initiation of phase 2 trial using sialic acid extended release tablets. This announcement has been on clinicaltrials.gov site for a while now.
Please refer to the link. All four centers are recruiting patients at this time.
http://www.ultragenyx.com/index.php?ht=action/GetDocumentAction/i/5045
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
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LA Mayor's Office Acknowledges the NDF's Advocacy with GNEM
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