There are a number of support options available. Whether you are affected by GNE Myopathy or know someone who is, meeting people having similar experiences and sharing your own may help.

Patient Support Groups


HUDDLEs are virtual, peer-to-peer support and mentoring group meetings focused on the cognitive health & well-being of people diagnosed with GNE Myopathy. This group meets (virtually) monthly and provides a safe and confidential space for GNE Myopathy patients to talk to one another about whatever is on their minds.

Register for the next HUDDLE here

Help fellow diagnosed people

Understand shared challenges

Develop connections

Dispense knowledge

Learn from each other

Empower each other to live life to the fullest

Being new to GNE Myopathy means that I am still processing and coping with the difficulties that have changed my life. I joined this huddle to hear what others had to say about how they feel and be heard in a place where I know I’m understood. The conversation was varied and the information and support provided was very helpful!

Sidney, GNE Myopathy Patient

Yesterday’s HUDDLE was so much fun. The way carried out, it sent so much of positive energy, good vibes and a place where we can share our personal observations and life experiences.

Sabeen, GNE Myopathy Patient and NDF CPA, Pakistan

I just wanted to express my gratitude for the opportunity to connect with fellow patients in this way. We were on the phone for over an hour Sunday morning. Not only is it such a helpful exchange of practical ideas/ tips, but it’s also so therapeutic on an emotional level.

Jennifer, GNE Myopathy Patient
Awesome HUDDLE today. I without a doubt know we are making a profound difference one patient at a time. I feel energized in these moments.
Tara, GNE Myopathy Patient
Support pictures- NDF- GNEM Myopathy Research.jpg

Other Patient Support Groups & Resources:

If you are interested in joining or learning more about our Family Member/Care Partners’ Support Group, please take this short survey.

GNE Myopathy specific Facebook patient support groups in many different languages.

For Caregivers/Care Partners:

For the Children of GNE Myopathy Patients:

For more helpful resources, visit our Patient Resources.

For a list of doctors familiar with GNE Myopathy, click here.