We appreciate your taking the time to complete NDF's GNE Myopathy Patient Registry Survey as we assemble a comprehensive patient database of patients with GNE Myopathy.   Before you agree to take part in this registry, it is important that you read and understand why we are requesting this information and how the information will be used. Please review the FAQ document (viewable and downloadable here) that provides details about this registry. If after reading this, you have additional questions, please don't hesitate to contact the Registry Coordinator at: registry@curehibm.org.
We request that you fill out as much of the information as possible.  We may contact you again over time, as we collect additional information. 
By completing the survey, you give the Neuromuscular Disease Foundation consent to add your information to and contact you about the NDF GNE Myopathy Patient Registry with the understanding that patient information is being anonymized if shared with any qualifying NDF scientific collaborator.  Your name and contact information will never be given to anyone without your permission. 

Please click "continue" in order to complete the survey.