NDF's mission is to enhance the quality of the lives of people living with GNE Myopathy through advocacy, education, outreach and funding critical research focused on treatments and a cure.
GNE Myopathy is also known as: HIBM, Nonaka Myopathy, Distal Myopathy With Rimmed Vacuoles, Inclusion Body Myopathy 2, IBM 2, Quadriceps Sparing Myopathy
2020 Virtual Speaker Series
Information & Registration Coming Soon
Monthly Patient HUDDLE
A peer-to-peer virtual support and mentoring group focused on the cognitive health & well-being of people diagnosed with GNEM
Each episode features a GNE Myopathy community member’s personal experience with GNEM.
Participants will include patients, scientists, caregivers and family members, all sharing the triumphs and sometimes tribulations of life with this rare disease in order to provide potentially helpful and supportive information for anyone whose life is touched by GNEM.
View our Guidestar report here
NDF is a registered 501(c)(3) nonprofit organization (EIN: 06-1789643)
Our Impact in 2019
Symposium/Patient Day Attendess
Scientific Minds Engaged with GNEM & NDF
Donated & Pledges Dollars
Our community thrives when we work together. Discover how your help furthers our cause and supports our vital programs.
News & Notes
Blog written by a non-GNE Myopathy patient about traveling in a wheelchair
The Neuromuscular Disease Foundation (NDF) will launch its annual Symposium on GNE Myopathy Speaker Series on Friday, May 8th, albeit in a much different format than in previous years. The series is designed to educate both the patient and scientific communities on GNE Myopathy, an adult onset muscle-wasting disease. The goal is to feature specific updates from all NDF grant awardees for the 2020 cycle.