Greetings from the Neuromuscular Disease Foundation.  We appreciate you taking the time to complete NDF's Patient Information Survey as we assemble a comprehensive Patient Database for all patients with GNE Myopathy.   

We request that you fill out as much of the information as you can in order to help us create a database with the most detailed and comprehensive information possible.

By submitting this form, you give the Neuromuscular Disease Foundation consent to add your information to and contact you about the NDF Patient Registry with the understanding that patient information is de-identified if shared with any qualifying NDF scientific collaborator.  Your name and contact information will never be given to anyone without your permission.