Connect with the GNE Myopathy Community
Find people who understand.
Patient Facebook groups & pages
Browse by language or region. These links are listed in NDF’s support directory. Facebook sign-in or group approval may be required.
United States · English
Patient-only Facebook group
Open resourceArabic
Facebook group
Open resourceFrench
Facebook page
Open resourceGerman
Facebook page
Open resourceHebrew
Facebook group
Open resourceIndia · English
Facebook page
Open resourceItalian
Facebook group
Open resourceJapanese
Facebook page
Open resourceTurkish
Facebook group
Open resourceUnited Kingdom · English
Facebook page
Open resourceHUDDLEs
HUDDLEs are welcoming, confidential online spaces where individuals living with GNE myopathy and their loved ones can come together to share and connect. Held regularly and without any rigid agendas, these friendly virtual gatherings give you and your family a safe place to talk about whatever is on your mind, share daily experiences, and find mutual support.
Care Partners and Families
Support for the people beside you