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Home
About NDF
History & Mission
Organizational Structure
Who We Are
Board & Staff
Scientific Advisory Committee
Certified Patient Advocates
NDF Ambassadors
NDF United Youth
NDF's Road to Gene Therapy
FAQs
Programs & Financials
Programs
Clinical Research
Patient & Carrier Advocacy
Awareness & Education
Emotional Wellness
Financials
Special Donors
Sponsors & Partners
For Patients
FAQs
Recently Diagnosed?
Assistive Devices
Wellness
List of Physicians
Genetic Screening Information
NDF GNE Myopathy Registry Form
Patient Stories
Videos
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
2020 GNEM Speaker Series
Podcasts
Photo Gallery
Past Events
Newsletter And Other Links
News Archive
Covid-19 Resource Page
Get Involved
Donate
Double Your Donation
Join Us
Ways to Fundraise
NDF Newsletter
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Recently Diagnosed?
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Patient Stories
Jennifer
Tara
Kelly
Saskia
Okoma Rose
Sweta
Caregiver Stories
Lonnie
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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
