Imagine you are a strong, healthy young adult with a lifetime of promise ahead of you. One day, you notice that you are having trouble bending your index finger. Or you realize you can't hold your foot up the way you used to. Or people start asking you why you're limping. You have no idea what's happening to your body, nor does anyone else. You are scared and confused and realize that you are helpless to stop the slow and terrifying transformation taking place in your body. That is what HIBM feels like. And that's just the beginning.

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Clinical Trials and News

A public-private partnership has launched an HIBM natural history study and patient registry.
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National Human Genome Research Institute (NHGRI) is recruiting patients for a Natural History Study of patients with HIBM.
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Ultragenyx Phase 2 Sialic Acid Study Results Presented at American Academy of Neurology on April 30, 2014
PRESS RELEASE

STUDY RESULTS

 

NDF Executive Director Carolyn Yashari Becher appointed to HIBM Steering Committee as part of HIBM Patient Monitoring Program to facilitate integration of patient registry and natural history information.
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