Our Vision

We envision a world where myopathies will not impede human aspirations, and where patients, and researchers collaborate on finding a cure for GNE myopathy.

Our Mission

Collectively we will cure GNE Myopathy through Advocacy, Education and Research: Read More

Who we are

We are an international group of GNE myopathy patients, family and friends, with the mission to generate awareness among patients and communities worldwide about this rare genetic disorder, and to provide information and support to patients. We are located in many countries including Asia, Europe, Middle East, and United States of America.