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Home
About NDF
History & Mission
Organizational Structure
Who We Are
Board & Staff
Scientific Advisory Committee
NDF Certified Patient Advocates
NDF Ambassadors
NDF United Youth
FAQs
Programs & Financials
Programs
Clinical Research
Patient & Carrier Advocacy
Awareness & Education
Financials
Special Donors
Sponsors & Partners
NDF's Road to Gene Therapy
For Patients
What is GNE Myopathy/ HIBM?
Recently Diagnosed?
Patient Stories
FAQs
Videos
Resources
List of Physicians
Genetic Screening Information
Patient Information Form
Recommended reading from NIH
For Physicians & Scientists
Resources for Physicians
Diagnostic Aids & Current Trials
Resources for Scientists
Grants
Information, Updates and Studies
Scientific Studies
News & Events
Press & Media Links
Upcoming Events
Webinars
Podcasts
Photo Gallery
Past Events
Newsletter And Other Links
News Archive
NDF All Star Impact Winners
Get Involved
Donate
Double Your Donation
Join Us
Ways to Fundraise
NDF Newsletter
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What is GNE Myopathy/ HIBM?
Recently Diagnosed?
Patient Stories
FAQs
Videos
Resources
List of Physicians
Genetic Screening Information
Patient Information Form
Recommended reading from NIH
Patient Stories
Jennifer
Tara
Kelly
Saskia
Okoma Rose
Sweta
Caregiver Stories
Lonnie
Family Member Stories
Family Member Stories
Patients in the news
Mona-"From Shame to Strength"
Published July 24, 2019
Shilpi Bhattacharya- "GNE Myopathy: Why It Is A Bad Dream"
Published June 19, 2019
Saskia Melches- "Walk My Life to Drive My Life"
Published June 2019
Rushabh Desai- "I choose to focus on what I can do, not on what I can’t"
Published July 9, 2019
